Opening Plenary Reception
Mahadeo A. Sukhai, University of Toronto
Mahadeo Sukhai welcomed participants to the opening reception of the NEADS 2008 national conference, “Learning Today, Leading Tomorrow.” He invited the 178 delegates who attended the conference from across Canada to enjoy the dynamic workshops and inspiring keynotes and to work together in finding solutions to the challenges facing students with disabilities.
Sukhai recalled the vision that led to the creation of NEADS in 1986. A group of students with disabilities believed that a national organization was needed to provide disabled students with information and access to post-secondary education resources and services, to advance inclusion in the post-secondary environment, and to conduct related research.
At the time, relatively few students in Canadian colleges and universities self-identified as having a disability. But NEADS’ founders believed that “if we build the environment, students would come to populate it.”
“Come they did, at least partially because of our efforts,” said Sukhai. Today, although only about 4% of the student population self-identifies to their campus disability services offices, disabled students are entering post-secondary education at all levels and in growing numbers. And they are graduating and seeking further education or employment in their fields of study.
Ultimately, “a universally accessible system is better for all, not just for the disabled population,” Sukhai said. Societal attitudes and the perceived costs of accessible education remain challenges, but he offered an alternative perspective: People learn differently, and by tailoring teaching methods to different learning styles, including those of disabled students, all students will learn effectively.
NEADS and its partners and allies have made a difference, but our work is not done, said Sukhai. NEADS therefore has rededicated itself to its mandate: to encourage, facilitate, and advocate for the full inclusion and participation of students with disabilities in the post-secondary environment and workforce.
The disabled population wishes to “be treated like everybody else,” without having to “be like everybody else,” Sukhai said. People with disabilities wish to have the same opportunities and choices as everyone else. They want to be able to attend the college or university of their choice, enrol in the program and field of their choice, and earn a living doing the jobs they are trained to do and in the fields in which they studied. They are not seeking a quota system or affirmative action; they want only a level playing field and the same opportunities to demonstrate their capabilities.
“Like the Reverend Dr. King, I have a dream that, with the hard work and dedication of everyone in this room, we will be judged on the content of our character,” said Sukhai.
This path requires patience and personal responsibility, he said. It means more than simply self-advocacy or self-disclosure, but also being ready to demonstrate one’s capabilities, to continue to learn, and to claim ownership over one’s own disability, education, career, and destiny.
Sukhai listed some challenges to overcome. Even as many university and colleges are adopting more inclusive learning philosophies, more work must be done to ensure that programs are accessible. And technological solutions to barriers faced by disabled students must better emphasize practicality, cost-effectiveness, and timeliness. Moreover, students with disabilities must work toward greater representation.
NEADS must expand and strengthen its partnerships to meet its goals, said Sukhai. It has broadened its partnership base and developed collaboration with the post-secondary and public sectors. For example, along with several organizations, it has launched a research project to assess the current financial barriers faced by students with disabilities.
Sukhai noted several people with disabilities who have achieved excellence and risen to the top of their professions. They include the three keynote speakers at this weekend’s conference: the Honourable David Onley, Lieutenant Governor of Ontario; the Honourable Steven Fletcher, Minister of State for Democratic Reform; and Sandi Bell, a Commissioner for the Canadian Human Rights Commission.
Through its Equity Through Education Student Awards program, NEADS applies a broad and multi-dimensional lens to the question of excellence, said Sukhai. The winners must demonstrate commitment to, and success in, an academic discipline; leadership and volunteer experience; involvement and participation in their communities; and the potential to contribute to society.
Sukhai spoke about how the post-secondary environment has changed substantially since 1986. For example, disability services offices are now the norm; student demographics and diversity continue to evolve; and distance education, the need for students to work, and new definitions of learning are reshaping post-secondary education.
So too must NEADS change to remain relevant and successful. The financial barriers project is a pilot for future outreach efforts, Sukhai said. Outreach must include the financial services sector; the post-secondary sector itself, outside of service providers; and other NGOs both in Canada and internationally, such as service providers and professional associations.
A century ago, even 50 years or a generation ago, people with disabilities were often institutionalized; their learning disabilities, mental health disabilities, and developmental disabilities were not recognized; and they continued to be marginalized, excluded, and denied opportunities. Today, people with disabilities in developed countries enjoy hard-won rights and freedoms, the results of the efforts of advocates who argued on behalf of the disabled population; families, teachers, friends, and caregivers who exhorted disabled youth to reach and surpass their limits; and people with disabilities themselves who repeatedly said, “Yes, I can.”
However, these rights and freedoms are largely lacking in many parts of the world, where “for the want of resources, youths with disabilities are excluded from the opportunities that we take for granted,” Sukhai said.
Twenty-two years ago, students with disabilities came together from across Canada and said, “Yes, we can,” Sukhai said. This year again, “we come together, as we do once every two years, to renew our vision for the future, to learn from each other, and to reaffirm, with one voice, ‘Yes, we can.’”
Full text of this speech can be found in Appendix 1.
Mahadeo A. Sukhai welcomed participants to the national conference. “We have lots of exciting things in store for you,” he said. He introduced the NEADS board and staff and thanked the association’s corporate conference sponsors.
Sukhai said that since this conference is the first for many participants, they should seek out board members and staff for assistance and information. He said participation in associations such as NEADS is important, since “one person making a difference at the right place and the right time can truly make a sea change.”
Sukhai said that he and the whole of the NEADS board had enjoyed their work over the past two years. Accomplishments include the completion of an organizational review, new partnerships, continued successful flagship programs such as website and job site, and Job Search Strategies Forums held across the country.
“All our board members engage in different ways, and all their hard work and dedication deserves applause,” he said. Looking to the future, Sukhai said the participation and commitment of the membership would drive future opportunities.
Sukhai asked Nathalie Fougère and Paolo Monteagudo to present an abridged version of the NEADS activity report. They gave updates on the Job Search Strategy Forums project, the NEADS Equity Through Education Student Awards program, and other initiatives concerning academic and financial barriers faced by students with disabilities.
Job Search Strategy Forums
Job Search Strategy Forums help people with disabilities successfully transition from school to work, said Monteagudo who is Chair of the NEADS project committee. These forums have been held across Canada since 2005 feature guest speakers including employment equity and human resources specialists and opportunities for one-on-one consultations with career counsellors. Thirteen events have been held to date from coast to coast with close over 900 participants so far. The events are fully accessible, and travel subsidies are available. Upcoming forums will be held in Calgary, Montreal, and other locations yet to be determined. This project is being supported with funding from BMO Capital Markets Equity Through Education Program.
Equity Through Education Student Awards and the Science and Technology Project
The Equity Through Education Student Awards program, said Fougère, is the first of its kind in Canada. These cross-disability tuition awards recognize excellence in academic potential and community leadership and involvement. They encourage full access to post-secondary education for persons with disabilities, who often have greater barriers to participation and extra costs associated with their disability. Over the last two years, said Fougère, 11 scholarships were awarded to students across the country.
Monteagudo also told participants that the Imperial Oil Foundation is currently supporting the initiative “Enhancing Opportunities for Post-Secondary Students and Graduates with Disabilities in Science and Technology Related–Fields” until 2010. This project, which was started in June, involves the development of a print and online resource guidebook, a workshop at the national conference, and the establishment of a science and technology outreach task force to examine the barriers for students with disabilities in these fields of study.
“With a specific focus on students and employees with disabilities in the science and technology sector, and with the establishment of partnerships, we hope to contribute in a novel and unique way to the inclusion of students in this sector,” said Monteagudo.
Fougère said NEADS is also partnering with the University of Toronto’s Centre for the Study of Students in Post-Secondary Education to study debt load and financial barriers as they pertain to students with disabilities. This project, concluding in 2009, is funded by the Canada Millennium Scholarship Foundation and the Higher Education Quality Council of Ontario. It will lead to the development of an online survey tool and enhanced data analysis and will culminate in the development of a report on this issue.
Monteagudo told participants that an enhanced NEADS Online Work System (NOWS), our job site, had been launched in March 2008. The new site, he said, contains enhanced features for job seekers and employers and now allows career counsellors to register.
In response to a question, Sukhai gave a brief overview of the board member nomination and election process. He explained NEADS’ board structure, regional representation requirements, and eligibility. “No prior participation is required,” he said. “However, you must have skills and be willing to work.”
Workshop Theme I: Job Search Strategies: Competing in the Job Market
Jennifer Dillon welcomed participants to the morning workshop on job search strategies. She said that NEADS’ objective is to help disabled students move from academic success to rewarding careers by providing them with workshops, resumé consultations, and networking tips. “It’s exciting to think that in a few years’ time you could be up here sharing your success story.”
She said the panel of speakers would cover a variety of topics and perspectives relevant to disclosure and accommodation issues in the workplace. The decision to disclose a disability to an employer, she said, is very personal. Dillon said she hoped the workshop would help participants determine how best to handle their particular situation.
Working with Purpose: Having Experience under Your Belt
Julie Ouellette gave participants tips on how to combine work experience and post-secondary education. After a brief overview of statistics regarding the link between post-secondary education and higher earnings, Ouellette told participants that with more individuals accessing post-secondary education, a degree or diploma might not be as meaningful in the job market unless paired with some work experience. She said job postings often call for a minimum of work experience, since employers “want to know you can apply your theoretical knowledge in a work setting.”
The benefits of hiring an employee with work experience are quite evident for the employer, said Ouellette. Employers want to know “what you will contribute to our organization, what strengths you will bring to their team, and if you can do the work you will be hired for,” she said.
Students also can benefit from work experience. Work experience can be financially rewarding; can bring context and meaning to studies; can help students learn more about their work options, develop a sense of competence or determine a future career; and can increase social participation.
Students with disabilities face particular challenges when trying to combine work and school. These students may already be taking a reduced course load and have no time to work, may be limited in their potential earnings because of funding sources, or may not know how to advocate for their needs.
Ouellette suggested several paths that could lead to work experience as a student. She said that students should find out what options are available in their post-secondary institution, such as co-op placements, internships, apprenticeships, experiential learning, research or teaching assistant positions, or mentoring. She also mentioned volunteer opportunities or alternate work arrangements such as flex time or telecommuting as good options for students with disabilities.
Ouellette outlined several organizational myths students with disabilities could face in the workplace. The first one, she said, is the “You Look Normal to Me” syndrome. This occurs most often in the case of hidden disabilities, where the employer fails to see the need for accommodation and the employee needs to be more vocal about accommodation requirements. Another myth is that a disabled person requires more training or that accommodations are too expensive or excessive for a short-term placement or for a student worker. However, “research indicates that in most cases, accommodations for disabled employees cost less than $500,” she said.
Ouellette gave participants an outline of the top personal qualities employers look for in a candidate. These include verbal and written communication skills, a strong work ethic, the ability to work well with others, initiative, and problem-solving skills. She suggested that post-secondary students look for work in a stable environment that is honest and fair, that employs ethical practices, that offers benefits, and that provides security. Enjoying your work, promoting your skills and abilities, and having a positive attitude are also important, she added.
As to where to go for help in their job search, Ouellette told participants to comb through online job search sites, visit their post-secondary institution’s career centre or disability services office, tap into their social network, and connect with community organizations.
Ouellette quoted Anatole France: “To accomplish great things, we must not only act, but also dream; not only plan, but also believe.”
Being Your Own Self Advocate: A Key to Success in the Field of Health Care
Sarah Stonier, a third year nursing student from the University of New Brunswick, shared with participants her success story in the health care field. She said the message she wanted to convey was to break away from taboos and “learn how to help yourself by being your own advocate.”
Stonier gave a brief overview of her learning disability and how it has affected her academic career. Her personal motto, she said, is “Can’t Means Won’t.” Since she has a hidden disability, Stonier said it has been crucial for her to be able to explain her disability clearly to her teachers and colleagues. “In the real world, there isn’t always someone there to help you out,” she said. “Understanding your disability is the key to self-advocacy.”
Stonier told participants to learn about their disability and be able to explain it to others. She encouraged them to identify their strengths and weaknesses in order to play up the former and adapt to the latter. She told them to be proud of what they had accomplished despite their disability.
She suggested participants look at the accommodations they have made in their own environment, to help identify what they would need from an employer. She gave participants several examples of how she has adapted her work environment to play to her strengths. She said that her learning disability made it difficult for her to chart by hand or work in an operating room, for example. She sidestepped those weaknesses by choosing a work environment where charting is done by computer, and by working where she feels comfortable. “It doesn’t mean I’m a bad nurse; it’s just that I’ve adapted my work around my disability,” she said.
Stonier said it is important for participants to be clear on what their limitations are and to offer suggestions to their employer as to how to work around these limitations. That way, she said, the employer and the employee both know what the other needs. She said that at the beginning of her nursing studies she did not disclose her disability, “and it initially worked against me.” Too many accommodations, just like insufficient accommodations, can lead to frustration.
Asking for help can be difficult, said Stonier, but it is essential in order to succeed. She suggested that when asking for help, participants be polite, use “I” statements, ask for help after having tried at least once or when under a tight deadline, and find alternate ways to perform a task.
Preparing for Interviews
Sharon O’Hara, a recruiter with Wal-Mart Canada, gave participants an overview of the different types of interviews they were likely to encounter during their job search, and helpful tips on how to best present themselves to potential employers. “Opportunities like this conference raise you in the eye of the employer, so make sure to add it on your resumé,” she said.
When called for an interview, candidates should immediately research the company, the position, and salary expectations. It is also a good idea to ask the recruiter or the person conducting the interview for more details about the position or any other relevant information. O’Hara suggested participants practice answering questions and become comfortable speaking about their resumé and experience. The best way to do this is to enlist the help of family and friends to conduct mock interviews and review strengths and weaknesses. “Practicing makes you less nervous,” she said.
O’Hara told participants to prepare questions for the interviewer and to bring a copy of their resumé and a list of references to the interview. She said that by preparing for an interview, candidates show potential employers that they are interested in the organization where they are seeking employment. “Recruiting is like running a dating service,” she said. “It’s all about putting people together to create successful relationships.” She encouraged participants to “find out what a good job looks like” and to ask the interviewer why he or she works for the organization. The interview process is not simply one-sided, she said. It is also a good opportunity for individuals to determine whether a particular organization would be a good fit for them in light of their interests and goals.
On the logistical side, O’Hara recommended that participants plan their route and transportation needs, dress appropriately, know the name of the person they are meeting, and arrive on time.
Interviews are not meant to intimidate, said O’Hara. When employers request an interview with a candidate, “they want that situation to work out.” By asking what type of interview they will be participating in, candidates are better able to prepare. Knowing whether candidates will be interviewed by a panel, interviewed as part of a larger group, or asked to give scenario-based answers to interviewer questions can indicate the type of information employers are looking to glean from the process.
“Be confident,” O’Hara said. “You’re there because your qualifications meet the employers’ requirements.”
She told participants that a key element to successfully answering interview questions is to use the STAR technique: situation, task, action, result. This technique involves providing the interviewer with an overview of a situation the candidate has faced, explaining the task that was required, the action that was taken, and the subsequent result. Most interviewers are looking for these elements in candidates’ responses. This technique is also useful when interviewers ask candidates to give an example of a situation where they were not successful. “If you’ve rehearsed, you can put a positive spin on it,” she said. Experience gained at school and through volunteer work or club membership is just as valid as work experience, she added.
O’Hara said participants should not hesitate to take a few moments during the interview to formulate an answer. “Don’t rush to fill a silence,” she said. “Recruiters often use this as a tactic.” She said that asking the interviewer to repeat a question or formulate it in a different way is also perfectly acceptable. She added that candidates should never ask for validation during an interview, since it shows a lack of confidence.
O’Hara said recruiters are looking for candidates who are interested in the organization, who are prepared for the interview, who are positive and enthusiastic about their skills, and who are aligned with the organization’s needs.
“Don’t be afraid to say you’re nervous; don’t swear; and don’t use slang,” she said. O’Hara told participants that the interview “begins when you enter the building and ends when you leave the building.” She said that in her case, she often asks her office’s receptionist her thoughts on a particular candidate. “You are ‘on’ the whole time you’re there,” she said.
O’Hara continued with her list of do’s and don’ts. “Don’t stalk the recruiter, arrive on time, dress appropriately, come prepared, smile and shake hands, make eye contact, turn off any cell phone or electronic device, take notes, be specific, don’t interrupt, do your research, and be prepared to tell the interviewer why you want to work for this organization,” she said.
O’Hara also suggested candidates ask some general questions on the position but refrain from direct questions regarding hours of work or salary. She said that bringing a portfolio of past accomplishments is also acceptable, and that candidates should send a thank-you note.
On the issue of disclosure, O’Hara said that any gaps in a candidate’s resumé should be addressed. How these are addressed, or how an individual chooses to deal with disclosure, depends on his or her own comfort level and employment situation. In certain work environments, “the need to know” may be more pressing. O’Hara told participants that if they chose to disclose their disability to their employer, they should be “matter of fact and aware of what you need.” O’Hara said disclosure should be viewed as an opportunity to educate others.
Strategies for Success in the Workplace
John Huynh’s presentation focused on strategies for success in the workplace. Drawing on his personal experience, Huynh told participants that making the transition from school to work can be daunting. That is why it is important to follow a few basic rules when entering the workforce.
Huynh said that when beginning a new job, the most important thing is to relax. Most employers will give a thorough orientation and be more than willing to answer any questions. He said participants should listen, take notes, and ask for any required accommodations early on, “to ensure that you have all the tools you need to succeed.”
The disclosure of a disability to co-workers is a very personal matter, said Huynh. Some may prefer to wait; others may need to let a manager or co-worker know for safety reasons. Huynh suggested speaking about the disability to a supervisor in private, and speaking “in terms of how it affects you.”
Huynh offered an overview of some general skills that help ensure success in the workplace. These include adopting proper office etiquette, using effective time management techniques, and networking to build relationships and hone communications skills. He suggested creating a “network of mentors and people you trust who can give you advice.”
On career development, Huynh said that “once you have a foot in the door, your career is your responsibility.” He said knowing one’s skills, stretching boundaries, and showing initiative are excellent ways for employees to demonstrate that they wish to further their career. Researching internal job postings and the required skill sets, and job shadowing are also excellent ways to determine how to make a natural progression in an organization, he said.
A participant asked O’Hara to give examples of questions candidates can ask at the end of an interview to demonstrate a true interest in the organization. O’Hara replied that while she did not have any detailed examples, the most effective questions are specific and researched.
Dillon added that candidates should ask potential employers about the opportunities for involvement in the workplace, such as committees and working groups.
A participant asked O’Hara to share her thoughts on potential advantages and disadvantages of phone interviews for persons with disabilities. O’Hara said that as a recruiter, her objective is to make the hiring process as personal as possible. “With people with disabilities, we ask them what works best for them, but in person is best.”
Dillon said that in her experience, since her disability is apparent, a phone interview allowed her “to establish a rapport up front and then discuss my disability.”
A participant commented that it is not only the disabled person who should adapt to the workplace: employers should also be informed as to what persons with disabilities need. The participant said increased awareness on the employer’s part would go a long way in ensuring that persons with disabilities have the accommodations they need, not what the employers assume they need.
The panelists agreed, saying there is not enough information or awareness about disabilities. They said quick accommodations for last-minute meetings or unexpected situations are difficult to manage in the workplace and may require temporary or phased-in accommodations. Dillon agreed that “there should be a mechanism to quickly put accommodations in place and get information in a timely fashion to employers.”
O’Hara added that in her organization, “We champion using the associate as the advocate.” She said that by partnering with local agencies and resources in the community, employers could receive the support they need.
Two participants asked the panelists if they had experienced hiring or working with individuals who are hearing impaired and use sign language to communicate. They also asked O’Hara if deafness is included in Wal-Mart’s definition of diversity, since they knew of several individuals who had been turned down for positions with the organization.
Stonier said she had worked in a hospital setting with a person who is hearing impaired. “I know she faced a lot of challenges but she was able to adapt.” O’Hara said she knew of several hearing impaired employees of Wal-Mart Canada, especially in the Milton, Ontario, area, where the E.C. Drury School for the Deaf is located. She added, “One of our challenges is educating our store managers, who sometimes make false assumptions.” She suggested that any concerns should be forwarded to her at Wal-Mart Canada’s home office.
A participant asked the panelists how they suggested dealing with time management concerns. Dillon replied that it came down to the issue of knowing which tasks require the most time, and requesting accommodations such as job-sharing. Stonier added that as a nurse, “I am required to meet all the expectations, but I sometimes take a different path to get to the same point. It’s all about saying what you need, and as long as you still end up in the same place, most people will be willing to work with you.”
A participant asked for suggestions for maintaining eye contact during an interview when the candidate is blind or has low vision. She also wanted to know who was financially responsible for providing the necessary accommodations, such as a particular tool or software.
Dillon agreed that eye contact is difficult for people whose vision is impaired. She suggested that the candidate look in the interviewer’s general direction and that she practice with others, “to make sure you don’t look at the ceiling or the floor.” On the second question, she said, “My feeling is that it is the employer’s responsibility to provide the accommodations, but it is the employee’s responsibility to provide the information on his or her needs and the available resources.” Knowing what type of accommodation information will suit your employer and providing suggestions for short-term accommodations are also good ideas, she said.
Huynh added that some larger workplaces have a centralized accommodations fund. “It’s best to be open about what you need. You wouldn’t want to work for an employer who is not sensitive,” he said.
A participant commented that on the issue of accommodation, communication between the employee and the employer is crucial. O’Hara agreed, saying “Sometimes employers make assumptions and provide unnecessary accommodations that cost a lot of money.” She suggested that employees use the human resources personnel as their advocate, since they are often more educated on this matter. Stonier agreed that “having to ask is the hardest part.”
A participant asked O’Hara how candidates could find out before an interview what type of techniques will be used, such as a written test or group scenarios. O’Hara suggested that the person setting up the interview would be a good contact. “If they are doing their job properly, they will know how to help.”
A participant asked, “How do you know that you are not getting a job because of your experience or your disability?” Dillon replied that the interview itself is an excellent occasion to gauge the workplace’s organizational culture. Stonier said that indeed, “not all employers are open to hiring people with disabilities. You can’t always tell if you’re being discriminated against. If you think that is the case, there are avenues of recourse.” O’Hara added that it is perfectly acceptable to contact a recruiter after an interview and ask for feedback and any testing information. “A good employer will make sure their hiring practices are defensible.”
A participant suggested that post-secondary institutions include teaching about workplace accommodations and people with disabilities in their curriculum. The panelists agreed and said that participants should be the best advocates on this issue. O’Hara added that this would be “a good opportunity for you to shape curriculum. People with disabilities are underutilized in the workforce and have long been overlooked.”
A participant asked panelists to comment on union guidelines that restrict accommodations. Stonier said that if the employer and the employee agree on the needed accommodations, they should contact the union representative and work together to find an appropriate solution.
A participant said that because of her disability, she is often hospitalized. She asked for suggestions on how to broach that subject with an employer. Dillon replied that an employment counsellor might help determine what type of work and workplace would be the most accommodating in this case. O’Hara said that in her case, she has taken extended leaves from her work because of her disability, but has ensured that her absences could be accommodated by collaborating with colleagues who were familiar with her work and could temporarily replace her.
A participant asked Ouellette to comment on the earnings limitations placed on students receiving government assistance, and how they act as a barrier to finding paid employment. Ouellette agreed that students who are limited in the amount of money they can earn should look for other ways to gain work experience, perhaps through volunteerism or part-time work. O’Hara added that employers “also have to be creative in how they support students.” She suggested that co-op placements or other internship opportunities could be a good solution for some participants.
A participant asked, “What added value do disabled people bring to the workplace?” Dillon replied that hiring a workforce representative of the population can increase an organization’s customer base. Stonier said that in the health care field, hiring people with disabilities can help provide a different perspective on the services offered and give patients or clients a sense of hope. “As a nurse, I see myself as a role model,” she said.
O’Hara added, “From a diversity perspective, people can shatter the way you do things or question the way you work, and that’s a good thing.” She gave the example of two visually impaired recruiters in her office who were the catalyst behind moving from handwritten to electronic record-keeping. This not only benefited the two visually impaired recruiters, she said, but greatly improved overall productivity. “There are unexpected benefits to bringing people on who have had to look at the world differently,” she said.
A participant asked Stonier to relate her experience with the licensing body. Stonier said that she had not been licensed yet, but fully expected to be since, as a third-year nursing student, “I meet or exceed expectations.” If a person thinks they can meet the expectations of a nursing program, she added, “They should push, kick, and scream to get in. I have had to do all of the above.”
A participant asked how the panelists felt they could reconcile advocating for diversity in the workplace with the desire many persons with disabilities have to achieve their goals on “an equal footing.” There is a dichotomy between needing special measures to ensure diversity in the workplace and the desire to “respect the process and have the pride of doing things the same way as the able-bodied, where no one can say I received preferential treatment.”
Huynh replied that whether you follow the “regular path or the diversity route, moving on to the workforce is very difficult.” He said that while he got his initial “foot in the door” through the diversity incentives in his workplace, any subsequent advancement was done through the same channels as any other internal employee. “It’s difficult to decide which road you want to walk; that’s a personal choice,” he concluded. “But once you get in, it’s up to you.”
Dillon added that the issue is not simply a question of diversity, but accommodation in the workplace. There is no shame in asking for accommodations, she said. “Even people who don’t have a disability are asking for accommodations, such as parents with children asking for flexible hours or part-time work.”
A participant asked O’Hara for advice on how to deal with the introductory handshake when the person being interviewed has reduced mobility. O’Hara said that being upfront about whether or not you are able to shake hands is the best way to handle the matter. In any case, she quipped, “shaking hands will soon be extinct because it spreads so many germs.”
A participant asked for tips on writing an effective cover letter. O’Hara said that including correct information and tailoring the content of the letter to the employer is important, to “demonstrate that you know about the company and that you want to be part of it.” Referencing research you have done in your academic career that is relevant to the position is also a good idea, added Dillon. A professional presentation, correct spelling, and a widely used format, such as MS Word, are also necessary.
A participant recommended that visually impaired people have their resumé revised by a sighted friend to ensure that it is in an appropriate format.
A participant asked panelists to share pre-interview dos and don’ts. O’Hara said that all phone, email or written contact with a potential employer should be formal. Using an appropriate email address and voicemail message as well as correct spelling and vocabulary are all crucial to ensuring that no value judgment is made of a candidate before the interview. O’Hara also informed participants that employers often search social networking websites such as Facebook for information on candidates–she suggested participants ensure they are comfortable with what is on their site. After the interview, candidates should ask for business cards and send individual notes to everyone who participated in the interview.
A participant asked the panelists to comment on how to reconcile the rights of individuals with disabilities being accommodated in various workplaces, such as hospitals, and the “level of discomfort in society with people with disabilities being placed in these roles.” He asked, “How do we go about approaching people who may feel uncomfortable with having a disabled person providing care?”
Stonier replied that this situation does not apply only to persons with disabilities. In a hospital setting, for example, some patients may be uncomfortable with a male nurse. “If you have a good relationship with your co-workers, you can work around it.” O’Hara added that change is uncomfortable for many, but necessary. Dillon said that while “things aren’t perfect,” there has been a positive change. “In general,” she said, “most people are pretty impressed that people with disabilities are providing them with services. We need to continue on with that progress.”
Workshop Theme II : Enhancing Opportunities in Science and Technology-Related Fields
The science and technology sector of the economy is currently responsible for the creation of the majority of new jobs in Canada, said Paulo Monteagudo. Persons with disabilities are under-represented in the science and technology programs of post-secondary institutions. Anecdotal evidence indicates that many barriers prevent a significant fraction of keen students with disabilities from pursuing careers in this field. This academic under-representation transfers to the workforce.
People with Disabilities in the Sciences and Technologies: Interim Research Findings
Jessica Cowan-Dewar, who is the Consultant working on the NEADS Science and Technology Project (“Promoting Careers in Canada’s Science and Technology Sectors to Students and Recent Graduates With Disabilities: Success Stories, Best Practices and Resources”), funded by the Imperial Oil Foundation, said she was pleased to be sharing knowledge gained on the involvement of people with disabilities in the science and technology field. She described the project, which includes a literature review, an environmental scan, and interviews with key informants.
Cowan-Dewar focused her literature review on mathematics, chemistry, physics, environmental sciences, geology, information technology, and engineering. Literature from life and biological sciences was excluded. She drew from relevant published key papers and articles obtained from education and science and technology databases. To identify unpublished literature, she used the search engines Google and Google Scholar. The American Chemical Society website was another valuable resource, she noted.
For the purposes of the environmental scan, concerned less with literature and more with statistics, Cowan-Dewar conducted Internet searches; contacted relevant organizations, corporations, and disability service providers; requested information via listservs; identified and contacted key stakeholders; and held face-to-face meetings with relevant actors.
Cowan-Dewar summarized the key findings and recurring themes that have emerged so far from her research as follows:
Concerning the interviews with key informants – which are currently underway -- Cowan-Dewar said she had interviewed students and graduates (employed and unemployed), disability service providers, teachers, professors, and employers. She was hoping to interview a total of 30 people from all provinces and territories of Canada before completing this last phase of the project.
Cowan-Dewar presented the key interim findings of the research. She said stigma, misperception, and ignorance of the capabilities of people with disabilities were identified as the main barriers. She recounted two extreme examples:
Another recurring theme was when and whether to disclose a disability during a job interview. Among the physical barriers, Cowan-Dewar mentioned inaccessible classrooms and workplaces, inaccessible industries, and, most especially, inaccessible science labs.
When key informants were asked what supports and services could improve representation of people with disabilities, they suggested creating liaisons between employers and employees; exploring the possibility of paid internships; increasing employment opportunities in science and technology; raising awareness through advertising and education campaigns; and having schools and industries actively recruit people with disabilities.
All interviewees stressed the value of formal and informal mentorship programs and recommended increasing the profile of role models in science and technology. Cowan-Dewar said the final purpose of her work is to develop and publish a guidebook titled Promoting Careers in Canada’s Science and Technology Sectors to Students and Recent Graduates with Disabilities: Success Stories, Best Practices and Resources.
The guidebook would be available in French and English, in CD and DVD format, online, in print, and in alternative formats. It would include lists of resources, links to websites, key stakeholders, a collection of best practices related to employment in the science and technology sectors, as well as a good number of success stories and personal experiences.
Cowan-Dewar concluded with two key messages. First, although it is frustrating that Canada is not further ahead in representing people with disabilities in the science and technology sectors, there are well-developed and effective programs to build upon. Second, she said she could never emphasize enough the value of well-developed internship programs and mentoring relationships.
Disability in Science: A Student’s Success
Marie-Eve Veilleux told participants that when she was 18 months old, she was diagnosed with a severe form of arthritis that caused extensive mobility problems and progressively destroyed her knees, hips, wrists, and fingers. This made writing and carrying books extremely painful, and her academic life even more difficult. The disease attacked all her joints. After many painful surgeries, Veilleux regained the use of her legs, “but it is still hard to walk,” she said.
Veilleux, who holds a Bachelor’s degree in Microbiology and Immunology, began studying at McGill out of pure interest in learning more about her disease, although she knew she would never be able to work in a lab. Pursuing a science degree—which involved working in labs, writing papers, and conducting research—was not the easiest choice. She was at the conference to prove that it was possible, “because I did it,” said Veilleux.
She explained that she collaborated with the Office for Students with Disabilities at McGill to find creative ways to meet her degree requirements. Her strategy was to involve people in every step of the way. Common accommodations were available to her from the very beginning, for which Veilleux was grateful. However, she said, she wished to elaborate on some of the difficulties that students with disabilities face in science programs involving laboratory work.
The visually impaired are particularly challenged when asked to use microscopes to identify the color of bacteria, for example. Veilleux said she was unable to perform some of the most elementary tasks, such as handling a pipette or doing up the buttons of her lab coat. She was provided with a personal attendant whose duty was to do what Veilleux could not—tie her hair, put on her gloves, perform her practical exams. Veilleux would analyze the results and answer the questions.
This was not the best solution, she admitted. It was uncomfortable to continually ask someone to do things for her. So the following year, instead of being provided with an attendant, Veilleux was put in a team of three students instead of the usual two. In this way, while two students did lab work, Veilleux watched and wrote down data. Her practical exam was switched to a written exam. She would describe the experiments and the results and write a conclusion.
This new approach worked. It eliminated her anxiety and stress, thus improving her academic performance.
Veilleux encouraged students with disabilities to collaborate with university staff to find appropriate arrangements and to talk to professors directly, rather than involve a greater number of people. “Sometimes it is better,” she said. “Sometimes, you just don’t have the energy.”
When it comes to requesting and getting accommodations, Veilleux said, there are no right or wrong answers. Students must find their own way.
The heavy course load in science is also a problem, Veilleux said. Students who are already stressed with coping with a disability could find the stress of theoretical courses overwhelming. Veilleux discovered after starting the program that she could become a part-time student, which markedly improved her grades and her quality of life. Veilleux encouraged students with low energy levels to consider becoming part-time students and to apply for scholarships. She said policies that award scholarships to full-time students only—which she is still fighting—should not prevent anyone from applying.
After completing her science degree, Veilleux learned that finding a job was not easy. Most advanced career paths that suited her physical limitations did not interest her. It was then that she discovered her passion and talent for language and became a scientific translator. Her academic goal for 2009 is to pursue a Master’s in Epidemiology, a post-graduate science program that involves statistics, not labs.
Veilleux said her greatest pride was having proven all naysayers wrong. She said she hoped her example would encourage all persons with disabilities to apply to their program of choice.
Opportunities and Opening Minds: Candid Comments from the Security of Tenure
If deaf people were not under-represented in academia, said Dr. Kathryn Woodcock, there would be 300 deaf university professors in Canada, instead of two.
A professional engineer as well as a professor, Dr. Woodcock was appointed to the Accessibility Standards Advisory Council of Ontario and was the Canadian Hearing Society’s first deaf president.
Dr. Woodcock took participants on a journey back to her time as an undergraduate. In those days, her strategy was to sit in the front row and lip-read. This was particularly challenging when some teachers spent most of the time writing on the board. Only later did Dr. Woodcock realize that teachers explained as they wrote on the board. This shed some light on some bad grades, which had made her believe she wasn’t as bright as some peers.
Dr. Woodcock remembered a teacher who knew she was deaf and still paced the classroom while he taught. Dr. Woodcock got the information when he walked towards her, but not when he walked away from her. Such was life. With no disability services or mixed-ability culture to support her, she had to manage as best as she could. “In those days,” she said, “you just had to suck it up.”
After graduation, continuing to “suck it up” involved excruciating challenges such as answering the telephone, when all she could hear were vowels. But it was hard enough for a woman to find work as an engineer even without a disability. Fortunately, her luck turned and she moved into a more inherently suitable role in industrial engineering in health care that involved less telephoning and more analysis and consultation.
Dr. Woodcock attributed her first executive position in a hospital to luck and to the toughness inherent to the engineering culture. It helped her focus not on her disabilities, but on her selling points: systems thinking and writing skills.
Her first coping strategy, Dr. Woodcock said, was “faking”—not misrepresenting anything but rather representing herself at the maximum of her abilities. As a result, her hearing impairment never came up during interviews. People understand labels differently, she said and “disclosing earlier than necessary may be lethal.”
While Dr. Woodcock worked at the hospital, she pursued a Master’s degree part-time, learned sign language, and eventually earned a PhD. It was not all “happiness and holding hands,” she said. Many promises of access were unfulfilled. Universities agreed to pay for interpreters they were later unable to find. Scientific societies either refused to provide interpreters or did provide them but refused to leave the lights on so that Dr. Woodcock could see them.
As a result, her second coping strategy became, “Don’t take yes for an answer.” She urged participants to make sure they are given what they need and to assume the worst—that access arrangements will fall through the cracks—and double check.
Another challenge is smart people who think they know best. In science and technology, this often means a fixation on technologizing the access process and eliminating human intermediaries. But communication is not just about the message; it is also about the relationship between the people conveying and receiving the message. From people’s wrong assumptions she learned to always state what type of access accommodation she wants, what she does not want, and why. “You must be an educator,” Dr. Woodcock said, “even if you didn’t sign up for that.” This applies even when dealing with “experts” on deafness who are not deaf and who think, for example, that deaf people should only specialize in Deaf Studies Solutions range from crying in the shower to writing a snappy letter to the editor, she said.
Dr. Woodcock’s third coping strategy is “Pick your battles.”
She warned participants that picking a field in high demand is not a foolproof strategy to land a job. Her fourth coping strategy, she said, is “Have something special.” This will give low-level managers the bravery they need to “sell your skills to their boss.” Dr. Woodcock also emphasized the importance of having goals, even if they change every day. She said everyone should have a goal they could rant and rave about in an interview.
Dr. Woodcock told participants they would be unable to make everything happen for themselves, but they could make some great things not happen by not being ready to take advantage of an opportunity. “You’ve got to be ready for luck.” She told them they could go anywhere they wanted, as long as they knew where they wanted to go.
A disability service provider asked Dr. Woodcock for creative ways to negotiate accessible accommodations with faculties that embrace “the hard way.”
Dr. Woodcock said toughness is ingrained in the culture of engineering faculties. One solution might be turning accessibility into an engineering problem. For example, for Disney theme park engineers, accessibility is a challenge and, ultimately an achievement that reflects on their design excellence, as well as a service to Guests, and not merely as a regulatory obligation.
A participant acknowledged the importance of human interaction but stated that technology-enabled access did serve people with disabilities who were unwilling to identify themselves. He asked, “Where do we draw the line?”
Dr. Woodcock distinguished between technology that aims to provide access and technology that aims to save money. She said that, like human interpreters, technology mediates the interaction between people with disabilities and everybody else. She attributed part of the problem to perception: people view technology as attached to the deaf person. “They want the problem to be about me, not about them.” She was puzzled, however, by the haste to eliminate human intervention, especially when it is effective. She had noted that human interpreters serve a critical function for her of interpreting the relational aspects of communication that she finds difficult to perceive with Asperger’s, in the first place, and impossible with text transcription alone.
A participant asked Cowan-Dewar what databases she had used and how accessible they were. Cowan-Dewar said she had used technology and education databases, but claimed no expertise on the subject of accessibility of databases. She regretted that these databases were not very accessible.
Another participant wanted to know whether the Canadian government encourages students with disabilities to pursue careers in science and technology. Cowan-Dewar said the Americans with Disabilities Act shows that, even regarding legislation, the United States is more progressive in this area than Canada.
When asked how publishing a guidebook would change what looks like a structural problem, Cowan-Dewar replied that sharing personal success stories and best practices would allow people to better understand and to empathize with the lives and issues of persons with disabilities. She said that raising the profile of persons with disabilities who “had made it” would trigger discussions and open doors to dialogue.
When asked whether women’s experiences had been taken into account, Cowan-Dewar replied that gender had always been a consideration. However, she said that the literature review showed nothing but a huge gap in that regard. She thanked the participant for having reminded her of another challenge.
When asked to elaborate on the topic of applying for scholarships as a part-time student, Veilleux replied that students with disabilities are indeed recognized. She praised McGill University for its flexibility and for its policy. However, she suggested that if this issue were tackled at a national or provincial level, part-time students with disabilities might not have to fight so hard for scholarships.
A participant from the Government of Canada’s Office for Disability Issues said the federal government has the Enabling Accessibility Fund, and that conference delegates can access information about the program online.
A participant asked whether women with disabilities face additional obstacles in the male-dominated fields of science and technology. “Even if that is generally true of the group as a whole, first of all, you can’t change what you are, and it doesn’t necessarily have to be true for you.” ,” Dr. Woodcock replied. The real question, she said, is “Can you make it something positive? Can you use the ‘minority’ factor or the element of surprise to stand out, get noticed, make an impression?”
Keynote Speaker - The Honourable David C. Onley, Lieutenant Governor of Ontario
David Onley saluted the efforts and determination of all students with disabilities across Canada. He said that his position affords him the unique opportunity to “speak truth to power, on behalf of those whose voices are drowned out in society,” and in so doing, to draw public attention to the cause he has chosen as the overarching theme of his mandate: accessibility.
Onley defined accessibility as “that which enables people to achieve their full potential.” This requires breaking through attitudinal barriers. Onley suggested that the most subtle of attitudinal barriers is the erroneous assumption that disability means inability, especially in the context of employment.
Contrary to what many employers believe, little physical accommodation or cost is required to bring people with disabilities into the workplace. According to research done by the United States Department of Labor’s Job Accommodation Network, Onley reported, 46% of employers spend absolutely nothing to accommodate a disabled employee, while 45% incur a one-time cost of less than $500.
Onley said these myths and misperceptions led to the numbers found in the most recent Participation and Activity Limitation Survey by Statistics Canada: 49% of people with disabilities were unemployed or not in the labour force in 2006, compared to 20% of the general population. However, people with disabilities accounted for the largest untapped labour group in Canada. Onley said a wide body of research indicates that hiring people with disabilities boosts the bottom line, enriches the social and economic fabric of society, and expands the taxpayer base, in addition to increasing the financial independence of individuals with disabilities.
Onley said he takes every possible opportunity to convey this to audiences from the business world, because the first barrier to be toppled in order to increase employment opportunities for people with disabilities is the attitude of most employers, who hesitate and even resist hiring people with disabilities.
Onley shared an assessment by a not-for-profit recruiting organization based in New York, called Lime: In the United States, people with disabilities are estimated to control aggregate annual income in excess of $1 trillion, an emerging market on a par with the size of China. Lime represents high profile clients, and on their behalf aggressively recruits the largely untapped talent pool of people with disabilities found on campuses throughout the United States.
In US colleges and universities, the percentage of freshmen with disabilities has more than tripled over the past two decades. This fall, Lime brought its campaign to Ontario, with the objective of building connections between enlightened corporations and graduates with disabilities. Lime’s clients, including companies such as PepsiCo and Google, are aware of the staggering employment potential of people with disabilities. Approximately 15% of people in the North American labour market have some kind of disability. “Which company, especially in today’s troubled economic times, can afford to ignore them?” Onley asked. His conclusion was none that want to stay in business.
It all comes down to attitude. For years Onley gave a speech entitled “Everyone Has a Disability, What’s Yours?” He would ask people what they saw when they met someone with a disability for the first time. In a perfect world, people would see only the ability within the person. But the truth is, we all see the disability, Onley said. That is human nature. What matters is that we do not form a value judgment based on the surface reality, but see the person within.
Onley quoted Roger Crawford, who was born with severe physical disabilities but became a tennis star in college and a certified coach with the United States Tennis Association. Crawford said: “The only difference between you and me is that you can see my handicap, but I can't see yours. We all have them. When people ask me how I've been able to overcome my physical handicaps, I tell them that I haven't overcome anything. I've simply learned what I cannot do—such as play the piano or eat with chopsticks—but more importantly, I've learned what I can do. Then I do what I can with all my heart and soul.”
If everyone learned to look beyond disability, said Onley, we would have an inclusive society that would welcome and support the full range of human ability.
To illustrate this point, Onley related a story he had heard at the Fair Havens Bible Conference from Bob Morris, from Interserve Canada. When Morris was teaching English at Don Mills Collegiate in the mid-1960s, he met an interesting young man called Gerry. Gerry was in a Grade 10 English class for students who were considered incapable of going past high school. Nonetheless, Morris decided to teach the class about mass media, an emerging phenomenon in those days. At one point, Morris quoted Marshall McLuhan as having said, “We don’t know who first discovered water, but we are pretty sure it wasn’t a fish.”
Gerry did not get the point. Morris suggested the class think about it overnight and discuss it the following day. The following day, Gerry gave a crystal clear account of McLuhan’s quote: “The fish’s environment is water. It is his worldview. The thing we are least conscious of is our own context—the environment in which we live and move. So the fish would be the last one on earth to ‘discover’ water; it’s virtually all he knows.”
Morris was astonished and asked Gerry how he had come up with that. Gerry replied, “I went home and phoned Dr. McLuhan. He talked to me for half an hour and explained it to me until I understood it.”
Onley said it would have been very easy for Bob Morris to dismiss Gerry as a kid who would not be going far and thus would not need to know about Marshall McLuhan. Because he had not, Onley suspected Gerry had done very well.
Onley said that is precisely the message he takes around Ontario, urging people to look beyond disability when hiring or interacting with people with disabilities. People with disabilities have the same work ethic as others. All they need is the opportunity to show their talents. Onley said he would not be speaking at this conference if someone had not done that for him.
Onley said he is referred to as a role model because he was one of the first visibly disabled people to appear on television. But the role model for employers should be Moses Znaimer, former president of Citytv, who took a chance 23 years ago, by hiring Onley for an on-air position.
Onley said he had attended an event in Bracebridge, Ontario, during the summer. The town crier at the event introduced him by comparing accessibility to the common, everyday door. The crier posed some questions that Onley shared with the participants: Can the blind person find the door? Can the arthritic hand turn the doorknob? Can the person with an arm injury push the door open? Can those with mobility issues pass through the door? And are those without disability prepared to open the most important door of all, the door to their minds?
Onley asked, “Will we choose today to help those at the door of disability?” He said that if we do, then regardless of who we are, regardless of our own challenges, it is we who turn disability into ability.
Onley said that as Ontario’s first Lieutenant Governor with a physical disability, he will continue urging employers to look beyond disability and see the limitless possibilities within all people. He will remind them that the participants at the NEADS conference are working to improve the lives and future of the next generation of Canadian leaders.
In the name of the Queen, Onley congratulated everyone at NEADS for the work accomplished over the last two decades, and wished all participants a very productive conference.
Full text of this speech can be found in Appendix 2.
NEADS Conference Banquet
“BMO is proud to be a Platinum Sponsor” of the NEADS 2008 national conference, David Moore said. Moore discussed several of the initiatives BMO has established during its long partnership with NEADS.
The Equity Through Education program, founded in 2005, improves access to education for disabled students who have “talent, but a lack of support,” Moore said. For one day out of the year, all trading commissions are donated to enterprises that promote access to education. The program has gone from raising $1.6 million in its first year to $6.6 million in 2008, and it now supports 2,000 students.
“Part of BMO’s motivation is simple: it’s the right thing to do,” Moore said. However, BMO Financial Group also reaps considerable benefit. “By helping to create a more diverse workplace and supporting bright people to achieve their ambitions,” BMO Financial Group creates a pool of bright, highly motivated potential employees.
Funding from BMO through the Equity Through Education Program has supported important NEADS initiatives including the cross-Canada Job Search Strategies Forums, which provide interactive panel discussions on how to transition from school to the workplace; 11 student scholarships; and the NEADS Online Work System (NOWS), which currently serves 1,700 post-secondary students and over 100 employers. Moore noted that BMO and one of its competitors uses the job site to attract prime talent.
As the father of a child with autism, Moore said he is beginning to understand some of the challenges faced by people with disabilities in their day-to-day lives. BMO Financial Group recognizes people with disabilities as “a huge, untapped pool of people with all types of abilities,” and has tripled their representation in its workforce over the last 16 years.
“It’s no longer enough to do the right thing; we must also ensure that we are doing things right,” Moore quoted.
Keynote Speaker - Sandi Bell
Sandi Bell told participants a “once upon a time” story about a biracial baby girl named Jane born in Montreal. The Children’s Aid agency that took charge of her feared no one would want to adopt a biracial baby, but as luck would have it, found a woman who was married to a black man and dying of cancer. Jane was “loaned out” on the expectation that the woman would live only six months.
In fact, the woman lived seven years, and loved Jane enough to adopt her. However, “cancer did what it often does.” The day after the funeral, Jane moved with her adopted father to the home of the woman he had been seeing on the side. The next day, Jane was beaten for the first time.
Jane suffered terrible abuse for years, for sins as minor as looking the wrong way or wearing the wrong-coloured socks. She lost vision in one eye from a tossed cigarette; she lost her front teeth; and she was frequently beaten to unconsciousness. Worse, she was told that she was ugly, stupid, worthless, unloved and unlovable. At the age of 13, while being beaten with a broomstick, Jane threatened to go to her father, only to be met with howls of laughter and the news that Jane had been adopted. “You don’t have a father,” her stepmother said.
Jane decided to take her own life. However, she found she could not go through with it. She was held back in part by fear of going to Hell, but also by hope, inspired by a book about Harriet Tubman, who was beaten savagely by her master and who escaped slavery at the age of 13. “If Harriet Tubman could escape from slavery, I can escape from this house,” Jane declared.
Jane dropped out of school and ran away from home, taking only the clothing on her back. She went to Children’s Aid to confirm whether she could legally leave home, and the agency—not knowing what to do with her—placed her in a home for wayward girls, alongside former thieves and prostitutes. Jane was passed from foster home to foster home, but after her years of physical, emotional, and sexual abuse, lacked the social skills to live with a normal family.
Jane persevered. She lived on her own at the YWCA and went back to school. She fell in love, got married, and had three children. She continued her education, and was a leader in her community. And then one day as Jane was driving, a drunk driver went through a stop sign and put her in a wheelchair for life. “Jane” was in fact Sandi Bell.
“Why would I share my personal pain like that?” Bell asked participants. “Life is tough. But you know what? We can make it.” By becoming educated no matter their challenges or barriers, and by attending conferences such as this one to improve their workplace skills, participants are ensuring that they will be the leaders of tomorrow.
Bell shared several chilling economic statistics:
“Are you wise and smart to be getting your education? You bet!” Bell said.
Among post-secondary schools, 8% say they have no special programs for people with disabilities, and only 2% of post-secondary students use their services. Community colleges have much greater enrolment of students with disabilities, which Bell speculated suggests those students are being streamed away from university degrees. The province of Quebec, said Bell, has the lowest enrolment rate for people with disabilities: 0.66% compared to 6% in other provinces.
Bell discussed several federal and Supreme Court decisions related to disability rights. These included a high-achieving student who was denied access to a private school because she had cerebral palsy, and an Aboriginal school secretary pressured to quit and openly accused of being crazy after she made a presentation to students about First Nations beliefs and spirituality.
In both cases, the courts ruled that the schools’ practices were discriminatory, but the judgments came years after they would have been useful to the people involved. “You are the future leaders; you are the ones who need to take a stand to see to it that these things stop,” Bell said.
Bell spoke briefly about the duty to accommodate, noting that courts have ruled that the “undue hardship” that absolves schools and employers of this duty must be more than just financial considerations. “We all know accommodation doesn’t cost that much,” Bell said. “It’s often just an employer’s or a school’s attitude that needs to be accommodated.” Nor are new claims such as “risk” or “harm to staff or student morale” sufficient without solid evidence. It is “bunk” that teams are demoralized by having to “carry” team members with disabilities, or that people with mental illnesses are an undue danger to those around them, Bell said. She invited participants to contact her for further information about human rights cases.
Human rights claims require enormous financial, time, and emotional investments. Prevention is needed so that human rights claimants do not have to bring forth their claims in the first place. Bell expressed great appreciation for caregivers, and urged them to join in these efforts by speaking to their city councillors, provincial government representatives, and members of Parliament, and taking a stand when they see issues in their workplaces.
Bell commended NEADS for its excellent work. “I believe we would not have the number of people with disabilities in post-secondary education without you,” she said. NEADS’ support not only allows students to get into school but to stay there and to go back for second and third degrees. Bell urged participants to reflect on their great personal worth and concluded by playing an inspirational song about self-appreciation.
NEADS General Membership Meeting
Mahadeo Sukhai welcomed participants to the biennial general meeting and reviewed the day’s agenda.
Presentation of Audited Financial Statements
NEADS operates on a two-year planning cycle that coincides with the term of its board, Sukhai said. The financial statements show the two-year comparison between the 2006–07 and 2007–08 fiscal years. Each fiscal year begins on April 1 and ends on March 31 of the following year. The membership were presented with Audited Financial Statements for the 2007-2008, as prepared by McCay, Duff and Company LLP.
Sukhai noted that as NEADS holds a conference every two years, the expenses in a conference year are skewed toward conference-related activities. The 2006–07 conference year incurred a slight net loss, while the 2007–08 fiscal year shows a slight net gain. A NEADS conference costs from $90,000 to $100,000.
NEADS prepares a separate budget for each operating expense and income category and each project expense and income category. Specifically, it maintains individual monthly spreadsheets for each income and expense category, each project, and each year as used internally by the board for planning. The expense categories are those mandated by federal government reporting rules.
Revenues come from several sources: federal grants; conference fees from registrations, exhibits, and corporate sponsorships; and project funding contributions.
Expenditures are incurred for production of materials and events, conferences, travel and accommodation, scholarships, rent, professional fees, and interpretation and translation services.
Approval of Audited Financial Statements
Approval of Auditors for 2008–09
To approve McCay, Duff & Company LLP as the auditors for the 2008–09 fiscal year.
Presentation of Constitutional Amendments
Tim McIsaac, the chair of the Constitutional Committee, outlined the constitutional amendments approved by the board.
NEADS has not reviewed its constitution since it was adopted in 1986, he said. After 22 years, the board undertook a review to ensure the constitution is consistent with current practices, and uses language and terminology consistent with those used by other NGOs and corporations. As NEADS is a corporation, such consistency will ensure it operates in a professional, credible manner.
For Article VI concerning the Board of Directors, the major amendment was to change the term “representatives” to “directors” to reflect the fact that the representatives run the organization as opposed to serving as advisors.
For Article X related to Voting Members, the amendment articulated current voting practice and defined the need to keep proper minutes of all decisions.
For Article XI concerning Powers, the amendment formalized the board’s accountability to the membership.
For Article XIII, on Errors and Omissions in Notice, the amendment defined the need to keep proper minutes of errors and omissions.
Substantive modifications were made to use gender-neutral language, reorganize NEADS’ objectives to clarify its statement of purpose, alter the definition of “disability” to reflect current practices, and delete the obsolete Administrative Coordinator section.
The Term of Office was amended so that, instead of having directors serve their two-year term from conference to conference, they would serve from January 1 of the year following the conference until December 31 of the year of the next conference. Thus, today’s newly elected board will not take office until January 1, 2009.
The Secretary and Treasurer were separated into two positions, creating a five-person executive so that there will no longer be tie votes. In addition, the Executive Committee’s roles and responsibilities were redefined to fit current practices.
All other changes were made to be consistent with the practices of other NGOs and to clean up language, grammar, and redundancies.
Discussion on Constitutional Amendments
Sukhai said the amendments were based on an extensive scan of NGO constitutions to ensure consistency with standard practice.
NEADS senior advisor Jennison Asuncion added that the organization has undertaken incremental constitutional amendments in previous years but these past two years have been the first time for such an extensive effort.
A participant noted that the word “office” is missing from the first sentence of the Term of Office line item in Article VII, between the words “taken” and “on.” Sukhai noted this change as a friendly amendment.
The next participant expressed concern about a mismatch between the English and French names of NEADS. The English name refers to “disabled students” while the French name translates to “handicapped students,” she said.
NEADS national coordinator Frank Smith explained that the association was originally formed by English speakers who adopted the English name because they felt the acronym NEADS was clever. The translator then chose to reflect the constituents—post-secondary students with disabilities—in the French name rather than do a straight translation.
A participant noted that the revised constitution stipulates one-year memberships, but previous documents specified two-year memberships.
McIsaac said previously membership was tied to conference attendance, with the membership fee included in the conference fee. Those not attending paid a separate $10 membership fee. Because very few people chose the latter option, the amendment was made to allow NEADS to receive new memberships annually, even though it has a conference every two years. The amendment will also enable NEADS to build its membership base by allowing individuals to join or renew online at any time.
Approval of Constitutional Amendments
Moved: Tim McIsaac
The revised constitution takes effect immediately. Because it stipulates that the new board not take office until January 1, 2009, a motion was carried to approve the extension of the current board’s term until December 31, 2008.
Sukhai clarified that any time an organization changes its bylaws, they take effect immediately. The bylaws are subject to review, not approval, by Industry Canada, and only if Industry Canada overrules them must they be changed.
Presentation of NEADS 2020 Vision and Implementation Framework
Sukhai said it was the hope of the past-president, Rachael Ross, to undertake an organizational review to evaluate whether NEADS is making the most effective use of its membership and resources.
NEADS hired Rotman NeXus of the University of Toronto, a consulting firm led by four MBA students, to do the review. Sukhai said the board deliberately chose not to hire an equity or diversity firm. Instead, it wanted an open, honest, unbiased review from a firm with a business-minded perspective.
Rotman NeXus began the review in March 2008 and presented its report to the board in June. The board approved all the recommendations and NEADS is now working on implementing several of the proposed initiatives.
Jewelles Smith outlined the objectives and activities of NEADS. Founded in 1986, NEADS is a consumer-based cross-disability organization whose objective is to advocate for full access to post-secondary education and employment opportunities, she said.
NEADS’ activities include conducting research, providing student awards, engaging in project-specific regional activities, providing information on financial aid and specialized funding, holding a biennial national conference, and maintaining a website (www.neads.ca) and a NEADS-L listserv.
All NEADS projects focus on one or more of four main themes. They include promoting full inclusion and participation in the academic, co-curricular, and extracurricular post-secondary environments, and encouraging students’ successful transition from secondary school to post-secondary to employment.
Joel Miller, Nova Scotia representative, said NEADS has a tiered membership fee structure, and starting in 2009 an online application form will be available.
Moreover, starting next year members will be eligible to participate in committees and planning. NEADS will also poll members online on key issues and develop policies and procedures for members to establish local or regional branches.
NEADS now accepts donations through the www.CanadaHelps.org site and will be unveiling a new corporate fundraising and sponsorship strategy.
The next national conference will take place November 12–14, 2010, at the Delta Winnipeg Hotel. Tim McIsaac will serve as interim conference chair.
NEADS is also planning to establish an advisory council.
The toll-free number 1-877-670-1256 will now connect callers to the NEADS national office in Ottawa.
This presentation was just a snapshot of what NEADS will be doing, said Sukhai. He noted that the organization needs and welcomes members’ involvement and ideas.
A participant raised the issue that some of NEADS’ online forms are not in accessible format.
NEADS’ website architect, Chris Gaulin, said that wherever possible NEADS will provide documents in HTML and PDF formats. The PDF documents are intended mainly for people to print and fill in for submitting, as opposed to completing and submitting online.
Asuncion asked everyone to notify the national office about NEADS web applications that are inaccessible so that the situation can be rectified.
Sukhai invited all the election candidates to stay involved whether or not they win. NEADS will run stably and effectively with everyone’s work, stewardship, and care for the future, he said.
Workshop Theme III: Solutions to Library / Print Material Access
Initiative for Equitable Library Access for Canadians with Print Disabilities
More than three million Canadians, or 10% of Canada’s population, have a print disability and require information in multiple formats; yet less than 5% of published Canadian material is available in multiple formats, Trisha Lucy said.
While students have access to multiple formats through government and schools, access stops once they leave school. The visually impaired can still receive help from the Canadian National Institute for the Blind (CNIB), but there are no services for the learning disabled, who must rely on public libraries. Yet libraries lack materials and resources to provide services to print-disabled Canadians comparable to those received by people who read conventional print.
The Initiative for Equitable Library Access (IELA) was launched “to create the conditions for sustainable and equitable library access for Canadians with print disabilities,” Lucy said. To this end, Library and Archives Canada (LAC) will develop a strategy by March 2010 to implement nationwide partnerships, activities, and services.
IELA focuses on several key activities. It is working with stakeholders to develop a strategy for improving access to materials in multiple formats. It is also developing service guidelines, training materials, and workshops for Canadian libraries on providing equitable library access. In addition, IELA will be creating a fully accessible Internet portal to provide information and resources for print-disabled people.
Another key activity is to establish an electronic clearing house enabling publishers to make their electronic files available quickly and securely to producers of materials in multiple formats.
IELA is also commissioning studies. It has surveyed public libraries to determine the degree of service and collections being offered to print-disabled clients. Further work includes a study of commercial audio and digital publishing in Canada and a report on access to library catalogue records for multiple format materials.
For more information, Lucy invited participants to contact IELA, join its public listserv, or visit its website at www.collectionscanada.gc.ca/iela/.
Solutions to Library / Print Material Access
Anthony Tibbs focused his presentation on the role publishers can take to ensure accessibility for print-disabled people.
”Access to information is a fundamental right of Canadians,” Tibbs said. He referred to section 32 of the Copyright Act, which provides exemptions for reproducing material for those with print disabilities. However, the exemptions do not allow large-print copies, and only individuals and non-profit or charitable organizations may make reproductions. Private companies cannot do so without the publisher’s permission.
Moreover, even if the publisher gives permission or provides an electronic file, sometimes it attaches restrictions, such as precluding Braille copies or requiring permission for every book.
Tibbs said scanners and optical character recognition (OCR) technology have made positive impacts, but they are time consuming, can introduce errors, and may not offer the format required. Meanwhile, little of the 5% of publicly available multiple format materials is useful for academic and technical studies, and some formats require specialized devices to enable access.
Ideally, Tibbs said, publishers should make alternative format publication part of the production process. This would increase the cost per unit only slightly, and the additional cost could be treated like a levy for serving the public good. Less ideally, publishers should commit to providing electronic files to alternative format producers. But because the market requiring alternative format materials is small, Tibbs said, publishers have little incentive to care.
To make them care, Tibbs proposed targeting large institutional purchasers, such as libraries and professors, to have them choose books based on whether the publisher will make those books available in alternative formats.
Funders can channel alternative format production funding into incentives for non-profit producers, and government can require authors and publishers who receive grant funding to make their material available to alternative format producers. Tibbs also suggested developing funding assistance initiatives to encourage alternative format production. One such initiative is the Book Industry Development Program of the Department of Canadian Heritage.
However, the key solution is to incorporate alternative-format production into the publishing process, “where it should be done in the first place,” Tibbs concluded.
A DIY Accessible Hardware Solution for Material Access for Post-Secondary Students with Disabilities
Ryan Vernon emphasized resourcefulness in his talk on taking a do-it-yourself approach to accessing print materials electronically.
Although technology will not work in every situation, Vernon said, two trends for creating timely, cost-effective solutions are cheap hardware and free or cheap software. He showed his ASUS Eee notebook computer, which costs about $400 and is loaded with accessibility software, including a screen reader, text-to-speech program, and a DAISY player.
For hardware, he said any desktop PC or laptop will do, but to run the free and cheap software that is available it must have Windows 2000 or a newer operating system installed. Optional hardware includes onboard sound, speakers, a custom input device, and an Internet connection.
Vernon presented a list of popular free or cheap software for blind and visually impaired people. Thunder, similar to JAWS, is a screen reader that uses a synthetic voice to read a computer screen out loud. Thunder is useful when combined with other programs, such as the accessible browser WebbIE, which turns normal websites into text websites.
WebbIE, combined with Thunder, allows users to listen to as well as navigate web pages. WebbIE includes an accessible RSS reader, Accessible Podcatcher, Project Gutenberg catalogue of free electronic books, and an accessible directory that uses the Open Directory Project (ODP) database. The ODP, useful for those with screen readers, is a human-compiled set of links to the Web.
ReadPlease is a text-to-speech program that converts computer-readable text into spoken language. While ReadPlease is free, TextAloud is a similar program that costs about $30 and can produce an MP3 file quickly. Both programs are helpful for people who learn best by listening and reading simultaneously. Canadian-made SpokenText is another free text-to-speech converter and can automatically generate an audio file.
Vernon explained that DAISY (Digital Audio Information System) is a digital audio book format navigable by chapter, section, heading, or page number. AMIS is a free open source software DAISY player. There are also hardware DAISY players. Another free media player is Winamp, which is similar to Windows Media or VLC media players. Adding the free PaceMaker plug-in to Winamp will allow users to adjust the playback speed.
There are also screen magnifiers, such as ZoomText and Iconico.
“Don’t be afraid to get your hands dirty, to try, to ask. You can do it!” said Vernon.
Usable Alternate Formats for Scientific Materials
Daniel Zingaro described the process when a student requests a book in an alternate format. Often there is no money and little time before classes start, but typically there is a long wait after sending the request to the publisher to obtain the electronic format.
It is easiest and quickest for a publisher to send a PDF file, Zingaro said. Once received, the file must be converted into an accessible format. Scientific materials are particularly hard to make accessible because of their special symbols, formulas, tables, and charts.
A screen reader can directly read a PDF file loaded into Adobe Acrobat. It can sometimes be easy to navigate through tables, but no changes can be made and it is hard to search for text. An alternative is to convert the PDF file to text. Various programs can do this, including Adobe Acrobat Reader, Adobe Acrobat Professional, and Xpdf. Once the file has been converted, a student can add notes and clean up the text.
However, sometimes these programs cannot extract the text since a PDF is an image and the PDF font information may not be available. OCR software will give varying results. Typically, these programs produce many mistakes when converting scientific content.
Zingaro presented another solution. Math and related material are awkward to type using a standard word processor, he said. However, there are mark-up languages that allow authors to enter this information in a text-only format into a computer file.
LaTeX is such a language. It is commonly used, readable with screen readers or other readers, and easy to learn, Zingaro said. For example, instead of the square root symbol, the author types “sqrt,” and for fractions, the author types “frac.”
Authors of math and science books send their LaTeX files to their publishers, and the publishers use the LaTeX source code to generate the PDF files they need. This means a version of the book probably exists in LaTeX, containing a completely accessible, text-only copy of the book’s contents.
Zingaro’s experience is that computer science courses and research use material from many books, journals, and conferences. It is impossible to produce all of this material in an accessible format. His solution is to ask publishers and authors for LaTeX.
Another person to lobby is the bookstore manager, a participant said. Student groups and unions can also put more pressure on the administration to ensure that professors confirm the course texts sufficiently in advance, said another participant. Every time a student advocates, it effects change, Vernon added.
A participant related an experience where her university was not equipped to reproduce the tables and graphics in a statistics text. She asked how to streamline the alternate format production. Another issue is having funding in place if the work must be contracted out.
Vernon said a partial solution is to have a centralized service for alternate format production. The economy of scale and centralized expertise will improve the effectiveness of production. He encouraged students to advocate for such a service if none exists in their province.
The next participant asked why there is no similar initiative to IELA among academic institutions for sharing alternate format materials. There is already an interlibrary system for borrowing books across the country, she noted.
Langara College has had success finding materials on LAC’s AMICUS database, where a number of alternate format sources publish their holdings, said Vernon. The college always searches AMICUS before spending time and money to produce materials.
Lucy added that the Canadian Association of Educational Resource Centres for Alternate Format Materials (CAER) brings together groups from across Canada to share materials for students from kindergarten to post-secondary school.
Libraries and institutions must be committed to doing active outreach, a participant said.
Another participant said institutions in Nova Scotia have been trying to create a digital library for students with disabilities, but they have been unsuccessful so far. Jewelles Smith said Simon Fraser University is facing the same challenge.
Most Ontario post-secondary institutions work with CAER, said a participant from the Resource Services Library at W. Ross MacDonald School (WRMS), a member of CAER. WRMS staff also searches AMICUS to prevent production duplication, and WRMS is undertaking a pilot project to identify gaps in its services and determine improvements to be made, the participant said.
Another participant suggested that universities hold part of the tuition from blind or visually impaired students in a fund to pay external service providers who can produce alternative formats quickly. The material could then be donated back to the university library.
A participant said the United States has a national initiative called www.Bookshare.org that provides print-disabled people with access to a large collection of books and periodicals converted to alternative formats. He asked whether there might be an appetite in Canada to fund such an initiative through government sources.
A national source would be great, said Vernon. The United States produces far more alternative formats, but due to the Copyright Act, institutions are unwilling to send electronic files to Canada. Students should lobby to remove that barrier.
Lucy said IELA is working with the International Federation of Library Associations and Institutions to deal with copyright laws and international resource sharing. It is extremely difficult, however, because copyright laws differ among countries.
The Inter-University Disability Issues Association (IDIA) and the College Committee on Disability Issues (CCDI) are two Ontario organizations of disability service providers on college and university campus working together for solutions, said one participant.
A participant spoke about the challenges of accessing articles, journals, and periodicals in alternative formats. Unlike books, they are published monthly and are hard to search using library websites. However, he said, neither the library nor the disability services office at his university has taken responsibility.
Front-line library staff may be able to help, said Vernon, especially those who are expert computer users, because online databases are not necessarily all accessible. He added that students should lobby university libraries to take alternative formats into consideration when purchasing content. The libraries are very powerful because they spend millions of dollars on online collections every year.
Tibbs said more universities must approach journal providers and book publishers on this issue. Library procurement contracts should incorporate accessibility requirements, agreed Lucy.
A participant from the faculty of Dawson College suggested that NEADS look to raising more awareness among faculty members. She also said better copyright information is needed in Canada. Often students must buy a book to have it produced in alternative format because they are told that it is illegal to duplicate a library copy.
Zingaro teaches computer science at the University of Toronto. He said he is currently using a book for his course that is unavailable in alternative format but is the best book for the course. He has scanned it for his own use but has no students who require it in an alternative format.
Vernon reiterated that the exemption in section 32 of Canada’s Copyright Act states that it is not an infringement of copyright to make a copy of a book in a format designed for people with a perceptual disability.
However, said a participant, often there is still confusion and people are told they cannot make copies. Moreover, resources to produce alternative formats must be available; otherwise the right remains unavailable.
The law says you can make a copy in the format you need, said Lucy, and you do not need the publisher’s permission. However, the law does not require the publisher to help you do it, such as by providing you with an electronic file.
A participant noted that often a book is destroyed in the transcription process and cannot be sold later as a used book. Tibbs said he has put the resulting loose pages of a book in a three-ring binder and people still bought it for $50. It depends on the book and whether the pages are returned, he said. Another participant said Halifax has a binding service that can replace the regular binding on a book. The amount one can get back for the book determines whether it is worthwhile to prepare it for sale, said Zingaro.
A participant from York University’s Library Accessibility Services encouraged students to make their needs known to their libraries. “You pay the same tuition and are entitled to books in a reasonable amount of time,” she said. “You are very powerful so go for it and use that power.”
A participant asked how to deal with producers and publishers to create accessible multimedia, such as reformatted CDs and DVDs that include captions. The participant from WRMS said the original producer may be able to do this, especially if the product was created using principles of universal design and accessibility for people with disabilities.
A participant asked whether Zingaro would be able to donate the alternate format copy of his course book to the library. Smith said perhaps one copy could be donated, but no additional copies can be made. A copy can be made in a format for people with a perceptual disability, said Vernon, but it violates copyright to give it to any other individuals.
Discussing the Initiative for Equitable Library Access electronic clearing house, Lucy said publishers such as McGraw-Hill, Wiley, Oxford, Thompson, and Pearson have signed agreements to participate. She described the process for obtaining a copy of a book in alternate format through the clearinghouse. As an example, if Vernon at Langara College receives a student’s request for a Braille version of a book published by Pearson, he first searches LAC’s AMICUS catalogue to see if the book is available in Braille or another format. If not found, he sends the request to Pearson through the clearing house system. Pearson then knows that Vernon is a legitimate producer. Pearson sends the electronic file to Vernon, who produces the book in Braille.
If a librarian at another school receives a request from a student who needs the book in audio, he will find on AMICUS that Vernon has the electronic file. So there is no need to contact Pearson. He asks Vernon for the file and creates the audio format for his student.
A participant said that to convert some art images on a small certificate to alternative format, one institution wanted $2,000. Zingaro said McMaster University has a Braille printer called Tiger that might work for simple images.
Discussing the difficulty of accessing materials from the United States, participants said that sometimes having a network of friends in the United States can help. Lucy said international talks are taking place to facilitate materials sharing, but progress has been slow since every country has its own copyright laws.
Vernon encouraged the participants to lobby their elected representatives on this issue. It is also important to know another country’s copyright laws and understand whether the problem lies there or in Canada, said Tibbs.
A participant said US government funding now provides qualified US students of all ages free access to the collection at www.Bookshare.org. Only part of the collection is available to qualified Canadian residents, and Canadians must pay a membership fee. However, what is available to Canadians includes over 5,000 titles and the number is growing.
The participant added that recent changes to US copyright laws have put the onus on publishers, if they refuse to provide the electronic file, to explain why they cannot provide it.
Vernon referred to the new copyright bill, Bill C-61, that was introduced just before the federal election. Modeled on the US Digital Millennium Copyright Act, Bill C-61 includes a provision stating that to remove a digital lock on copyrighted material would infringe on copyright. This provision would trump any other copyright claim, including the section 32 exemptions for persons with a perceptual disability, said Vernon. He said the same bill may be reintroduced and noted that not only must disabled students advocate for new rights, they have to fight for the rights they already have.
Zingaro said he has not had many problems obtaining electronic files from publishers. Whenever he could not get a file from a publisher, he would request it from the author, and he has never had an author refuse.
As long as a book is available at the Langara College library, print-disabled students have the right to borrow it in an accessible format, said Vernon. They must buy a new copy of the book to be reproduced, but the library reimburses the cost. However, not all colleges and universities have this policy.
A participant from McMaster University said students there can go to the university’s Human Rights and Equity Services office for help.
Workshop Theme IV: Key Issues on Campus: Perspectives from Students with Disabilities
Debt Load and Financial Barriers for Students with Disabilities: Research Summary
Melissa Bolton described a nationwide research venture undertaken by the Centre for the Study of Students in Postsecondary Education, studying debt load for disabled students in post-secondary education. This research is being undertaken with NEADS as a partner.
The purpose of the research study is to understand the relative debt incurred by students with disabilities in post-secondary education, the financial barriers they face, and the impact their debt has on their educational experience and decisions.
The research will be divided into four phases: interviews with disabled students in Canadian post-secondary institutions; interviews with Canadian financial aid offices and disability service providers; an online survey of Canadian students with disabilities; and quantitative analysis of national archival data supported by the Data Liberation Initiative (DLI) at Statistics Canada.
Researchers asked students about multiple topics, including their field of study, type of disability, financial supports, housing situation, employment status, and aspirations post-graduation. The preliminary analyses being presented were based on 20% of the total 60 interviews.
The study identified two major financial barriers, Bolton said: difficulties qualifying for external funding, and the limited number of bursaries or awards for students with disabilities. For example, the Ontario Student Assistance Program (OSAP)’s stringent and often conflicting guidelines are both a barrier and a source of frustration. Many students turned to part-time employment to cope, and expressed concern that that would delay their graduation and entry into the workforce.
Students’ sources of debt include tuition, educational equipment such as laptops and specialized software, student loans, and credit cards, Bolton said. The five major individuals or organizations that provide help are financial aid officers, disability service providers, family members such as partners or parents, and community or religious groups.
Besides identifying the sources of debt, the researchers also wanted to identify its impact on the student experience. Students unanimously said debt was a hindrance and a stressor and that it detracted from students’ social engagement by limiting their ability to pay for extracurricular activities.
When asked to identify their educational and employment aspirations after graduation, many students said they sought jobs in their field of study. Many hoped to pursue post-graduate degrees despite their financial barriers, and others expressed a desire to become advocates for other people with disabilities.
Perhaps most important, researchers asked students what they thought researchers ought to know. Students expressed concern about “the system,” and identified a need for greater access to resources and greater facilitation between networks. Finally, many students simply said, “Thank you for listening to my story.”
Bolton invited prospective study participants to contact the centre.
The Emergence of “Crazy” Students in the Academy: The Mad Students Society
“Hi, I am a crazy person,” Lucy Costa said. She described the Mad Students Society (MSS) and their concerns, as well as the emergence of mental illness—which she termed madness—in academic settings.
Costa explained that members of the mentally ill community identify themselves in diverse ways. Just as the lesbian and gay community reclaimed the word “queer,” members of the mad community self-identify as mad, crazy, or lunatic. Others refer to themselves as psychiatric survivors or inmates, while others use more mainstream terms like “mentally ill.” For many, using non-mainstream terms is a way of helping others understand that not everyone identifies with his or her diagnosis, and not everyone wants to be “cured.”
The MSS works to empower, support, and mobilize students who have experienced or will experience the psychiatric system. Members share their experiences and the rich history of the mad community. The MSS also identifies barriers, addresses systemic discrimination, provides peer support, and promotes self-advocacy.
Most important, said Costa, the MSS is an alternative to biomedical perspectives of mental illness. Members can discuss their diagnoses, but the focus is on creating a space where people can find ways of speaking about their experience beyond the traditional biomedical perspective.
Costa identified several issues faced by mad students. Students with mental illnesses face a lack of consistent accommodations standards across colleges and universities. Disability service providers also tend to lump together rights advice and counselling. These should be separate offices, said Costa, because students who need accommodations or are facing academic discrimination do not necessarily need or want counselling. Private institutions such as business schools are of particular concern, since they are unregulated and are under no obligation to provide accommodations, she said.
Classroom discussion is another area of concern, since while professors and students “can’t get away with making racist remarks, they can get away with making bigoted remarks about psychiatric disabilities,” Costa said. Mad students must choose between staying silent in the face of discriminatory remarks or constantly speaking out “and sounding like a radical leftist.” Moreover, she said, curricula that study mental health issues are written without any consultation from the mentally ill community.
Costa provided several possible solutions, including developing consistent standards for psychiatric disability practices across universities and colleges, and giving students a role in developing evaluations. Classroom discussions should be inclusive, and professors should not assume that everyone shares the biomedical perspective. Counselling and rights advice should be separated, and human rights training should be provided every year.
Costa urged participants to spread the word about the MSS. Mad students can get involved by joining in mad pride events, putting up posters, sharing their stories and history, and knowing their rights. Above all, she said, “Dismantle mentalism!”
Reframing Disability at Selkirk College
Trish Foy described Selkirk College’s shift from the medical model of disability to the socio-political, and the successes and challenges it has encountered.
Selkirk College is a small college with 2,300 students, of which about 200 have disabilities. The college’s motto is “Every Student Counts,” meaning every student, not just those who are able-bodied. The college’s mission is to develop empowered, effective citizens, and the goal of Disability Services is to maximize success and reduce barriers to post-secondary education. It works to eliminate physical, instructional, and attitudinal barriers by providing reasonable accommodations and fostering awareness.
In its efforts to reframe disability, Disability Services works to raise awareness among faculty, staff, and students about the types of disability at the college and “the fact that disability doesn’t mean inability,” Foy said.
The other major issue is shifting to the social model of disability. According to the medical model, disability is a negative deficiency that resides in the individual. The goal is to make the person “normal,” guided by a professional. By contrast, according to the social model, disability is a neutral difference that stems from the interaction between the individual and society. The remedy is to change that interaction. The agent of change does not need to be a professional but can instead be an advocate, a family member, or the disabled person.
The first step in this shift is to examine language, since it affects beliefs and attitudes and can perpetuate paradigms like the medical model. For example, Foy said, Disability Services is considering renaming itself the Disability Resource Centre to imply choice and to foster self-determination and independence. Technology can also remove barriers and make classrooms more accessible, such as through online postings of lecture notes or recordings.
Another method is the Universal Design of Instruction (UDI), a set of principles that addresses the diversity of learning styles. Faculty members are made aware that they can make their classrooms more accessible by giving take-home exams, assigning group projects, and posting notes and PowerPoint presentations.
Foy said Selkirk’s Disability Services is pursuing collaborations with faculty, such as by organizing focus groups with disabled students. The college also hosted a “Reframe Disability Day,” organized and promoted by students, including events such as a signing choir.
Foy highlighted the importance of respecting individual students’ needs and perspectives. Selkirk College’s accomplishments include improving academic accessibility and creating a shift in vocabulary. Its ongoing challenges include awareness, especially with new faculty or those with limited experience with disabled students, and implementing UDI principles.
“New thinking does take time,” Foy said, “but we think making this shift will allow our college to be more accessible and inclusive.”
No Fists or Apologies: Inclusion in University Social and Sport Extracurricular Programming
Erica Tanny discussed social inclusion in non-academic university programming, such as social and sport activities organized by the university or its communities.
Tanny has spent three years on McGill’s varsity swim team and is now a national-level para-swimmer. Sports participation provides incredible advantages, she said, such as the physical benefits of increased core strength and flexibility. Sport participation also enhances intellectual ability and skills; for example, while Tanny’s fellow students panicked while writing the very time-structured LSAT exam, she thought “Five minutes? I could make it up and down the pool 50 times.”
The greatest benefit, however, is developing psychosocial skills through interacting with others. For many people with disabilities, university may be their first time living without an attendant adult separating them from the general population. This independent feeling “can be overwhelming,” she said, but university is an excellent opportunity to take advantage of that autonomy to start creating positive social links with non-disabled students.
Participating in extracurricular activities also presents unique challenges. While campus disability service offices act as a go-between in academic settings, the rules of normal social interaction are completely different. “In social environments, no one needs to be your friend, and there is no requirement to allow you to participate,” Tanny said.
Tanny noted that one facet of the medical model is “release from social obligations,” in which people with disabilities are not required or expected to participate in social events. This trickles down into policies and creates a barrier to participation.
During Tanny’s frosh week, when she asked about wheelchair accommodations at a white-water rafting event, the organizers said they had assumed such students would not be interested in or capable of participating. “It becomes a cycle,” Tanny said; people with disabilities assume events will not be accessible and so do not participate, and because organizers never have contact with people with disabilities, they do not take accessibility into account when designing events.
“I do offer you hope,” Tanny said, and shared her steps to achieving a positive experience. The first step is maintaining self-awareness about personal barriers and limits. Once, when travelling to South Africa for training, Tanny discovered that the training facility was five soccer field lengths away from the pool. She arranged for one team member to piggyback her each day in exchange for exemption from mandatory pre-swim push-ups. This turned Tanny’s accommodation into a positive social feature and a competition. However, people must identify for themselves what they will and will not accept as accommodations.
People also need clear objectives. Tanny started swimming to have fun rather than to become a disability activist who challenged the university’s assumptions about varsity athletes. “Anything else was a by-product,” she said. Students should never apologize for demanding reasonable accommodations, but they should choose their battles carefully. Tanny assails structural or implicit barriers imposed by university policies “with no holds barred” and says there is absolutely no excuse for inaccessible sports buildings.
However, social barriers require a process of negotiation. “There is no shame in recognizing that forcing a situation to meet your needs might not work, and no shame in walking away,” she said.
Tanny suggested that academic accommodations could be mirrored in social and sporting events, such as by partnering students who are uncomfortable in social situations with disabled students who need assistance to participate. She challenged participants to consider how her presentation matched their disability and experiences.
In response to a question, Bolton said key informants were still being recruited for the research study, and invited interested parties to contact her.
A participant asked Bolton whether interviewers ask students what specific systemic changes they want to see. Bolton said the question posed to interviewees is more open-ended, but that the centre might consider asking “What would solutions look like?” in future. When asked whether this would require a separate research study, she said the study as it stands is intended to be a launching point for other research. There is currently no research regarding debt load for students with disabilities, and the centre’s researchers hope this study will help other researchers realize the importance of the topic.
A participant said this was the first he had heard of the social model of disability and asked where he could find further literature. Foy said the social model is still “new and fresh,” but there are many institutions in Canada, the United States, Australia, and the United Kingdom making the shift. There is now a broad scope of literature available, thanks to new Master’s degree- and PhD-level disability scholars.
A participant said research often “produces lots of nice tables and charts” and is then forgotten. He asked Bolton how the research study would be disseminated. Bolton agreed that research is often presented and then “falls off the edge of the planet.” The hope is to have the study published, whereupon it will inspire other researchers and research.
A participant asked Costa how small schools should address her call for separate counselling and rights advice, given their limited resources. If people gave up because of a lack of resources, “we wouldn’t be in this room now,” Costa replied. The MSS is simply a group of students and is not in a position to provide institutions with the appropriate resources to effect this shift—nor is this its responsibility, she said. It can, however, raise awareness about increasing state and pharmaceutical intervention in students’ lives, raise consciousness, and promote a cultural shift.
A participant asked Tanny whether she had spoken to students with disabilities who had tried to join fraternities or sororities. Tanny said fraternities and sororities do not have a prominent role at her university. However, the major issue for other types of social clubs is logistics. For example, many social events occur at night, when university transportation and paratransit are not available. The participant noted that NEADS offers an accessibility checklist on its website, which student unions and other groups can use when planning events.
A participant said that while the social model attempts to redefine disability as a difference rather than a deficiency, it nevertheless implies that the interaction between the individual and society is defective. He asked whether Foy would be open to creating a definition that does not imply any deficiency. Foy praised the suggestion, though she said the social model does not necessarily imply a deficiency. Rather, it implies that the environment is not sufficient for a positive or neutral perception of people with disabilities, and should therefore be changed.
Panelists took the opportunity to ask questions amongst themselves. Foy told Costa that Selkirk College’s Disability Services offers rights advice and personal counselling together, and asked how they could support students who do not want the counselling. Costa suggested framing the office’s offerings as services from which students could choose. Psychological counselling should not influence decisions about students’ rights to accommodations, she said.
Bolton asked Costa what counsellors can do to confirm that students are there by choice, rather than attending at someone else’s direction. Costa said offices should be staffed with a range of services, and there should be clarity about what counsellors and therapists can offer. “Young students just entering the psychiatric system don’t know there’s a huge movement,” she said, and may have encountered only the biomedical perspective of mental illness. Offering students a range of services lets them know they have a choice. She added that the participant who had earlier said he was unfamiliar with the social model “speaks to the gap between what gets written about in academic circles and what trickles down.”
A participant asked Tanny whose responsibility it is to break the cycle in which people with disabilities do not participate and organizers do not accommodate. “The generic response is that both parties should make an effort, but someone has to make the first move,” he said. Tanny said the responsibility is squarely on university or college administrations in academic settings. Social event organizers also have no excuse for not taking accessibility into account, she said, since resources and advice about accommodations are widely available. In the social realm, however, the pragmatic reality is that the push must come from the individual. In Tanny’s case, it was her passion for swimming and her flexibility with regard to accommodations that made the difference.
A participant asked Tanny how to convince university administrations to make sporting facilities and events accessible. Disabled students pay athletic fees as part of their tuition, Tanny said, and therefore have an implicit right to accessible facilities. Concerns about liability are “a legal fiction based on the medical model of disability as an illness.” She noted that some universities introduce adaptive sports like jingle ball as one-time events open to able-bodied students, and continue them once interest has been generated.
A participant expressed frustration at the difficulty of getting adaptive sports recognized as varsity-level. Tanny agreed that “disabled athletes are no less athletes” than those who are able-bodied. However, regulations are created by varsity associations rather than by universities.
A participant said she uses a laptop when taking exams but chooses to test in a separate room because the keyboard’s noise is distracting to other students. Foy agreed that accommodations should be customized for each individual and should be left to a student’s choice.
A participant asked how universal standards could be created for disability services, to ensure that students do not fall through the cracks by attending one institution rather than another. Foy said disability service providers discuss this issue at their own conferences and try to ensure a smooth transition, but they have not yet identified a solution.
A participant asked Foy what responses she has had from faculty. Most faculty members are open and receptive, Foy said, while others may need the actual experience of having a person with disabilities in their class to shift their perspective. She described one instructor who contacted Disability Services about a hearing-impaired student, concerned that other students would not want to partner with her during group projects. “Maybe everyone would want her in their group,” Foy countered.
A participant asked how professors should explain her hearing impairment to the class, noting that most do not know how to approach the issue. Foy suggested the student could work with Disability Services to identify a solution, or speak directly to the professor. Another participant recommended speaking just to the students in the working group rather than to the whole class, and noted that, “asking questions is the best way for people to learn what your disability is and how it affects you.” A third participant said he simulates for his class what dyslexia is like. His attitude is “this is who I am, and if you don’t like it, deal with it!”
A participant said many of her classmates love having her as a classmate because of her captioner. She echoed the previous participant’s message of self-advocacy. “This is the way I learn, and you’re just going to have to be happy about it,” she said.
A participant recounted her difficulties in CEGEP, where gym class attendance is a requirement for graduation. Tanny said it should be entirely up to individuals to determine whether they can participate, and she applauded any “aggressive efforts” the student was making to challenge the administration.
A participant asked Tanny how to convince reluctant people to provide accommodations. “We’ve all struggled with that,” Tanny said. In most cases, a softer approach of changing hearts and minds is most effective. However, in instances where individuals have vendettas or other personal reasons for resisting accommodations, Tanny recommended “going over their heads.”
In response to a question, Tanny said she would be open to sharing her successes and failures with others. “Lots of individuals have started advocating out of enlightened self-interest!”
The moderator asked Bolton how students and campus leaders could use her research to make and sustain changes. “How do we make that research practical?” Margaret Shalma asked. Bolton replied she did not yet have answers as to what students could do, but the goal is to create awareness of the field of study and encourage other research.
A participant said he was an able-bodied triathlete, and asked what he could do to help. “Recognize the legitimacy of disabled athletes,” Tanny said, thanking him for his question. She recalled swimmers at her first swim meet who commented “I wonder if ‘Terry Fox’ can swim or if she’ll sink to the bottom of the pool.” If able-bodied athletes maintain a “healthy respect for the accomplishments of the individual,” disability will be a non-issue, Tanny said.
Keynote Speaker - The Honourable Steven Fletcher