NEADS Conference 2000 - "Networking, Educating, Advocating: Delivering Success in the New Millennium"
Workshop B: Advocating
Moderator: Holly Bartlett, Nova Scotia Representative, NEADS
Susan Solursh: Student, University of Waterloo
Susan Solursh addressed the unique issues and strategies for students with both visible and invisible disabilities. Solursh was born with autism, which she said was misdiagnosed for years. Soon after, she developed epilepsy, which also was misdiagnosed until she "almost died." She used both to illustrate the unique problems faced by many people with invisible disabilities.
Solursh, who also has a visual disorder and a language disorder, explained that people with both visible and invisible disabilities are often viewed in two extremes; "either as a hero, or that you should be tied down to a bed in an institution."
Solursh said that people with visible and invisible disorders often receive treatment concentrating on the invisible disorder. For example, she observed, individuals with cerebral palsy and a learning disorder are often viewed as "mentally retarded". This is caused by service providers' difficulty in understanding the combined visible and invisible disabilities.
Self-advocacy is essential for students with both invisible and visible disabilities. Solursh noted that these students must learn to advocate for different needs in different ways. For example, she described how she has to hand in several drafts of a paper before reaching a final copy, an accommodation necessary for her language disorder. This needs to be explained to each professor.
Solursh stressed that knowing the intended audience and the context of the environment is extremely vital. For example, while many educators know about learning disorders, they may not be familiar with other disabilities. In this case, it may be pertinent to bring in someone to advocate on your behalf. In other cases, it may be better to disclose only the disability that the professor or employer needs to know about, because it is the one that will affect performance in that particular environment.
Solursh said that another big issue is change and transition. For example, her visual disorder deteriorates with time. Strategies that work one month may not work the next, and a student needs to know how to articulate changing needs to the significant players.
Solursh stressed that, ultimately, people with disabilities have to keep in mind that when things go wrong, something can be learned from it. "The whole is greater than the sum of its parts; so is the person," she concluded.
Patricia Pardo, Co-ordinator, Disability Resource Centre, University of Calgary
Pardo shared her experience of going through school with a disability, and how it taught her the importance of self-advocacy.
Pardo was born with a degenerative vision disorder. Both her parents were totally blind, and her brother has the same disorder. Pardo, who was born and raised in Mexico, said that while her family spoke occasionally of how the disability affected them, it was not a focus.
"The downside to not speaking of the disorder is that I was, as a young person moving from high school to post-secondary, very uncomfortable with the idea of advocacy," she explained.
Pardo said that while she graduated high school with enough vision to read print, her sight deteriorated throughout her first year at university. That, coupled with the advanced reading requirements and the need to navigate through the university unassisted, resulted in her failing the year.
Pardo took the following year off to find employment. It was during this time that she began "a journey to discover who I was and how to integrate my vision impairment into my life as a whole."
The skills and experiences gained from that year, and her involvement as a NEADS representative and one of the first disability organizers at the University of Calgary upon returning to school influenced her decision to apply for her current position at the University of Calgary.
Pardo said that it's important to realize that the core of advocacy is self-knowledge. Accessibility requirements are not "special," but rather allow students with disabilities to participate fully, as is their entitlement.
She stressed that, ultimately, the aim of advocacy should be toward the eventual elimination of need for disabled students' centres, in favour of integrating the accessibility requirements assured by these centres, into the school environment as a whole. "I need you guys to get me out of a job," concluded Pardo.
David Mulholland and Nathalie Crocker, Professors, Landmark College, Vermont
David Mulholland and his wife, Nathalie Crocker, are both professors at Vermont's Landmark College, the only college accredited for people with learning disabilities. The couple spoke, and brought along a group of students to share their stories and show how advocacy can work for students with disabilities.
Mulholland explained that advocacy is often multi-dimensional; the setting needs to be taken into consideration in order to effectively advocate. Self-advocacy can take on different strategies in families, communities and schools. He stressed that the request for more accommodations often gets looked at negatively (like requests for more money) and that students should not fall for that argument. "When you advocate, you're not asking institutions to make accommodations as if it's a new concept. You're asking them to distribute accommodations fairly," said Mulholland.
Landmark student Sean Promislow then shared his formula for success. "First, I discovered I had learning difficulty, and I demanded to be tested to see what was different about my learning," he said. "Then, I grew accustomed to it. That's why I call it a difference and not a disability. Then, I learned how to ask for what I need."
Next, Jincy Swartzbacker spoke about how she went through elementary school with dyslexia, at a time when no accommodation organizations existed. Returning recently to school, she credited the "fabulous faculty" at Landmark with helping her succeed through three semesters at the college. She said their focus on the basics, one-on-one tutorials, and opportunity for extra help after classes, are key.
Nathalie Crocker described how educators and advocates can help students achieve their full potential. They need to listen to students in order to learn about their personalities and interests. They need to emphasize living, time management, and study skills as a way of helping students understand themselves and their learning disabilities as completely as possible. Finally, she stressed the need to focus on student successes and on developing advocacy skills, until students no longer need the advocate.
Recommendations and Observations:
What are the skills and techniques necessary to advocate effectively?
- Community support
- Self-esteem; look at the positive side of your disability.
- People around you need to be willing to listen and understand you.
- Know your disability and needs, in order to properly articulate them.
- Know your resources.
- Remember not to get angry with people, just the institutions.
- Be firm, but not overly aggressive.
- Approach problems with possible solutions in mind.
- Look at people as whole beings.
- Determination and perseverance.
- Knowing what information to disclose, and to whom.
- Know your needs and rights.
- Say what you want - be clear and to the point.
- Eliminate "can't" from your vocabulary.
- A network of people who can offer support.
Once a grassroots organization is set up, what needs to be done to ensure it stays alive?
- Be willing to try new things.
- Get support from inside and outside the group.
- Communicate openly with others.
- Get more people involved; there's power in numbers.
- Organizations need to be physically accessible to everyone (i.e.; elevators).
- Keep focused on specific issues.
- Be proactive, not reactive.
- Have a mix of experienced and new students; promotes sharing of ideas, and puts people in place to carry on movement.
- Accountability of members and leaders.
- Involvement of both students and faculty.
- Mix both business and social events.
- Use positive enforcement, such as marches.
- Promotional materials.
- A coherent organizational structure.
- Obtain funding.
What are some examples of successful student-led grassroots advocacy projects/movements?
- GLBT movements
- SOAR (Student Office for Alternative Resources, at Loyalist College)
- ABLE York
- Peer helper programs at schools
Are there any unique issues students with learning and other invisible disabilities face as they advocate for themselves?
- Some people think learning disabilities are just laziness; trying to prove you have LD.
- Stereotyping; some teachers talk to you slowly because they think you're slow.
- Need to keep emotions in, in order to deal with the problem.
- Rules and requirements of courses can change without notice.
- Can't get things if people don't know you have LD.
- Some faculty and administrators too bureaucratic to bend rules.