RCAD: General Experience with Disability

1.  What is your experience with disability? — Do you have disabilities? Do you have loved ones who live with disabilities? Do you work with people who have disabilities? 5)What are some significant moments/events in your life that connect to disability? — For example, you can talk about hearing a diagnosis for the first time, meeting a role model, learning something important that helped form your understanding of disability, etc.

I discussed my various disabilities in the previous post, in this one I’ll focus on my broader disability awareness. When I was first told about Asperger’s Syndrome, I rejected the label- it sounded too negative. Even so, as a kid, I went to Camp Courageous of Iowa, with kids will all different types of disabilities. Even though, at the time I didn’t really identify as disabled and thought that the doctors were “lying”, I came to better understand and empathize with people with disabilities from that experience. After we moved to Minnesota, I and my brother both attended Camp Discovery or Camp Hand-in-Hand, both run by the Autism Society. Being around other kids with Asperger’s, I felt “normal” for once, and came to see it as a set of differences that are a disability in broader society. I reclaimed it as part of who I was, and made it my own, rather than a file that belonged to doctors and my parents.  These camps are held at sites owned by Courage Center in Golden Valley, and there are sessions for many types of disabilities, for both children and adults. Since there were several sessions for Deaf people, many of the staff are Deaf, and each cabin had a Deaf counselor. We learned some sign language as one of the camp activities, as well as informally, and I know one camper who took classes in ASL at St Paul College and was planning on getting certified to be an interpreter. I’m not sure if she has finished with this training. Anyway, I think the interaction between autistic and Deaf people is particularly interesting, since autistic people tend to have trouble reading and using body language, learning sign is a great way for us to learn body language and emotional expressions more systematically and explicitly, and it has potential as a form of communication for non-verbal autistics. Having adult autistics working at the camp- each cabin had one called a Mentor was also amazing, and I become a Mentor myself and worked as one for 7 sessions over the years.

I attended Augsburg College, which has great programs for students with both physical and learning disabilities. I will talk more about accommodations in a later post.  But anyway, in some respects college was like a grown-up version of going to the Courage camps- I had many friends with various types of disabilities, particularly in Queer & Straight in Unity and we helped each other when needed, and you didn’t feel like you constantly needed to explain yourself and your needs- a little here and there yes, but for the most part these differences were pretty well understood and accepted. All the roommates I had throughout college had Asperger’s or other learning disabilities, and one roommate used a wheelchair. Having him as a roommate definitely raised my awareness of accessibility issues, we’d go around, plan various social activities and realize “Oh, crap, Levi won’t be able to get in to that place!”

Questions from 30 Days of Mental Illness Awareness-

6: Do you have a family history of mental illness or mental health issues? (Caelesti’s note: I’m including anything that falls in the DSM-V, such as developmental & learning disabilities)

Ah, yeah you could say that! Especially on my mother’s side- I call the range of symptoms they have “the O’Leary spectrum”. My dad has Attention Deficit Disorder & depression (including Seasonal Affective Disorder) , and my mother has Obsessive Compulsive Disorder (OCD) and a mix of anxiety and depression (I’m not sure of specific labels) My brother is on the autism spectrum, also has ADD and depression. Several of my mother’s siblings and some of their children have various mixes of depression, anxiety, obsessive compulsive symptoms, AD/HD, and one person is bipolar & dyslexic. My mother’s fraternal twin sister is very calm and clear-headed in an odd contrast to the rest of her siblings!

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Deafness as Disability

I’m reading The Mask of Benevolence by Harlan Lane. In it he argues that various professionals that claim to help the Deaf community are actually harming them. I was reminded again by the book about how many Deaf people do not see themselves as disabled, but rather as a linguistic/cultural minority. That the Americans with Disabilities Act mandated certain changes, like mainstreaming of deaf students that actually held them back. Education of the Deaf might be more comparable to ESL/ELL than to other special education programs. If everyone knew ASL, maybe deafness wouldn’t be much of a disability. But as it is, though Deaf people can live very full lives and can do most things that hearing people do, they are still subject to inherent disadvantages of being deaf, and discrimination. The ADA protects  Deaf people from such discrimination but only if it’s classified as a disability. Sorry guys, you can’t have it both ways.

A few years back when I wrote a paper on the disability rights movement, I included a section on the Deaf President Now! movement at Gallaudet University. But was that appropriate? Are Deaf people part of the disability community or rights movement or should they be seen as separate if they want to be? DPN happened in the 1970s as other aspects of disability rights were emerging. Obviously, the Deaf movement is part of a larger social trend towards self-determination and changing social views of disability.

Another thing that bothers me about the “we aren’t disabled” argument is the sense that they see themselves as better than people with other disabilities. Now to be fair, there has been a similar tendency among the Asperger’s/high functioning autism community to reject the “disabled” label. I myself have questioned this.

We might actually have a better case for that- after all there is nothing that all AS/HFA people are incapable of doing, like hearing, seeing, walking, reading etc. However our brains are wired differently in a way that gives us disadvantages in society.

I’d like to reach out a hand to Deaf people and say, we would like to be your friends & allies. You have a distinct community, culture and movement that gives us a lot of inspiration. Most of us may be hearing but face other challenges, so we empathize with you. We understand what it’s like to feel excluded from society. So let’s work together.

Disability Rights Paper Pt 2

Activism in the Deaf Community

The deaf community, while part of the greater disability movement, is in some ways separate and even in conflict from it. Deaf people often see themselves as members of a linguistic minority rather than having a disability. Some of them even prefer to develop a separate community in which they can easily communicate rather than integrate into the rest of society which most disability rights advocates see as the goal. It is the strong communal bonds they have developed as a result of their social isolation that has led to the potential for social protest.

In 1988, Jerry Lee, the president of Gallaudet University was retiring, and the board of trustees prepared to appoint a new president. Gallaudet in Washington, D.C. is the nation’s only college specifically for deaf and hard-of hearing students. Up to this point, the school had been run by hearing people. Some alumni, who were frustrated with the discrimination of hearing people, felt that continuing to appoint hearing presidents to govern Gallaudet implied that deaf people were not capable of running their own university. Two of the candidates were deaf and one was hearing. On Sunday March 6, 1988, The board announced the choice of Elizabeth Zinser, the hearing candidate.

Students blocked all entrances to the university with cars and occupied the main office. Classes were canceled on Monday, and while they resumed on Tuesday, 90% of the student body did not attend class and continued to protest until their demands were met (Shapiro 1994: 79-80). Student leaders brought a list of demands to Jane Spilman, the chair of the board of trustees. The demands included the dismissal of Zinser, the appointment of a deaf president, the appointment of a majority of deaf members to the board and no punishments for faculty and students who participated in the protests.

The protests were as large as 1,500 people. In unison they signed “Deaf Power!”, “Deaf President Now!” and “Zinser Out!” (Shapiro 1994: 77-79) On Wednesday, Zinser came to Washington to take office but was prevented from setting foot on the campus. They would not recognize her as president. Zinser finally realized she could not run a university that was so strongly set against her, so she resigned. Subsequently Spilman resigned as well. Ultimately, I. King Jordan was selected as president, and half of the board members were replaced with deaf and hearing impaired individuals (Shapiro 1994: 81-83).The news of these developments received national attention and increased public awareness of disability issues.Two months after the events at Gallaudet University, the Americans with Disabilities Act (ADA) was introduced into Congress.

Ever since the events now known as Deaf President Now! have been annually celebrated, commemorated and studied at Gallaudet University. Sparks of activist passion relit when I. King Jordan announced his future retirement in December 2006, the board of trustees began searching for a new president. Faculty and students complained that they didn’t get enough input in search process. Also, students of color and their supporters were concerned over the lack of diversity of candidates, and at one point, a white male without a Ph. D. was chosen over an African-American male with a Ph.D. In May 2006, the board of trustees of Gallaudet University chose Jane K. Fernandes, the university’s provost as the next president. Some students, faculty and alumni opposed her designation, and began protesting. The chairwoman of the board of trustees stepped down, saying that she received threats (Bollag 2006).

Among the objections to the choice of Jane K. Fernandes as president were that she had a top-down leadership style, and was distant from students. Because of the university’s unique place not just as an educational institution but as a center of the national and international Deaf community, part of the president’s role is to be ambassador to hearing world, and a public supporter of American Sign Language both in education and the broader society.

Jane K. Fernandes, the candidate chosen as the new president, while deaf from a young age, was raised to speak and read lips and did not learn American Sign Language until age 23 (Bollag 2006). Gallaudet has traditionally recruited its students from schools and programs for children with hearing impairments. But as an increasing majority of students with hearing impairments are educated in the mainstream, Fernandes argues that Gallaudet must keep up with the times and attract students from different educational backgrounds and with different communication styles, both ASL and spoken (Teicher 2006). At a time when the deaf community is embroiled in controversy over the use of cochlear ear implants and other modern treatments for hearing impairment, advocates of Deaf culture and identity feel on the defensive. However, spokespersons for the protest, dubbed “Unity for Gallaudet” asserted that the media was framing the objections of the protesters to Fernandes as being “not Deaf enough” so as to discredit them and obscure the real reasons behind it (Schemo 2006).

In October, protests began again. Students blocked the main entrance to university beginning October 5 and put up a tent encampment. For a while classes were canceled but a boycott of classes continued after they resumed. On October 13 police were sent in and 135 students and faculty members were arrested. At one point a bull-dozer was brought in to push away protesters in a blockade, injuring several people. “We did not choose to arrest the students. They chose to be arrested” said Pres. I. King Jordan. Though Jordan had been popular before protest, after he called on police, a majority of faculty voted no confidence in Jordan (Bollag and Farrell 2006). More students, angry at the administration’s actions, joined the protest. Finally, after weeks of disruption, the Board of Trustees decided it would be best for the university to dismiss Fernandes and re-open the presidential search process. (Teicher 2006).

While the Deaf President Now protests lasted a week and united the University in the end, Unity for Gallaudet was much more divisive and contentious. In the first protest, the issue was more clearly about disability rights, as the protesters argued that people with disabilities are capable of running their own institutions and organizations. But in the second protest, the conflict’s relation to disability issues is more complex. It is debatable whether the protest was about the defense of Deaf language and culture, or highly empowered and united students and faculty demanding a better leader, regardless of the perceived Deaf ideological and cultural purity of Fernandes. Though there was very widespread support in the national and even international deaf community, I got the impression that there was less media and general public sympathy for Unity for Gallaudet.

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