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!

Reclaiming Autistic Identity

To give a little more background about my experience growing up autistic- I had been mainstreamed all throughout my schooling- with an aide from 4th grade thru junior high. The aide was mostly there to help me keep calm, or whisk me out of the classroom if I had a meltdown. (Before then, my mother was sometimes called in!) In Northeast Iowa there is a separate agency- the Keystone Area Education Agency. My parents said this had worked really well for them and other parents and their kids for advocacy purposes because it was independent from any one school district. As my dad putting “Having the school district in charge of allocating special education resources is like putting the fox in charge of the henhouse!” When we moved to Minnesota, my brother and I both had personal aides as required parts of our IEPs (though neither of us had them in high school) whereas we knew students with similar labels who were denied that option because the label of Asperger’s in particular was deemed “too mild” to need an aide. (This is one of the reasons the Asperger’s Syndrome label was removed from the new DSM)

My parents explained the labels to us, but we rather rejected them as they mostly sounded so negative, it just seemed like an insult from doctors who thought they knew everything. My parents even held a school assembly to announce our status without our frickin’ permission! (They claimed that students and staff were more accepting as a result, but I still think that was a horrible choice. I’ve forgiven them since then!)

When I had the opportunity to go to Camp Discovery, a summer camp run by the Autism Society of Minnesota for ASD kids ages 10-21, this changed as I got the chance to be around others like myself. One of the biggest things for me was that each cabin had a Mentor, an adult with ASD who working there. Ruth-Elaine was the one in my cabin. This was incredible! I had grown up with an autism community that only acknowledged as us non-verbal 5 year olds that were seen as a “terrible burden” and “tragedy” (with of course parents rushing to reassure listeners that of course they still loved their child) The only person with autism that had, apparently managed to reach adulthood was Temple Grandin. These are still obnoxious tendencies that I encounter, but things have changed a lot!

Anyhow, after attending camp my view of autism changed. I no longer saw it as a disability, but as a difference, though one with some aspects that were easier for me (and others!) to deal with than others. I reclaimed it as an identity from the know-it-all doctors and scientists and parents, and made it my own. At some point I discovered other autistic adults with similar views online, on the Autistics.org website, writings by Amanda Baggs (now Mel) Laura Tisconik, Jim Sinclair and many others. What was also cool is that many of these writers/activists are also queer-identified! I became a participant in what later became known as the Neurodiversity movement, advocating for a view that there are as many types of minds as there are people, and that we should be included and understood on our own terms, rather than expected to conform to a narrow concept of “normality” (or neurotypicality).

I attended Camp Discovery a couple of times as a camper, as did Dylan, my brother, and I also became a Mentor myself for 7 years! I decided to step away from that position to allow others to take it, as for many of us it is the first job we manage to get, or the first one in which we can really be ourselves. I was also asked to speak many times by Kari Dunn-Buron, the director of the camp and a professor at Hamline University’s autism education program. I spoke on (paid) panels about my experience on the spectrum at autism conferences and classes at Hamline. When Kari retired a few years ago, I lost that key connection, and I’ve been meaning to re-connect. However, I am really interested in doing speeches rather than just panels where I answer certain questions, as there are many issues which are not addressed. I want to focus more on discussing transition and employment issues, and dating, sexuality and relationships. I also would like to tailor speeches for different audiences- parents, education professionals, social work & healthcare workers, and so forth. And yes, I’d like to get paid, though I do not expect to make my entire living doing this! (Getting my driver’s license will make this work a lot easier!)

See also: Against Parent-Led Autism/Disability Organizations