Here is my Aira story from Medium
We have reprinted the Oregon State Bar article about accessibility on our MAST website. The Oregon State Bar Bulletin archives remain inaccessible.
From the fitness blog, see how I have dealt with some of the little challenges of swimming DB.
When Attorney Leonard Duboff, who is blind, asked me to help him write an article for the Oregon State Bar Bulletin about digital accessibility, I said “sure!” and then promptly skedaddled over to the Bulletin website to get a feel for its tone. When I got there, it all made sense why the article needed to be written. Displayed in a photo flipbook format, The Oregon State Bar Bulletin was 100% inaccessible. “Ah, I see!” I thought. “I will be writing an article about blindness access that no blind person will be able to access. Classic!”
To their credit, once the OSBA was made aware of the issue, they did take steps to remedy the situation. They are working with our web accessibility consultants to improve their website’s compliance with WCAG guidelines. I hope that improvements will come soon for blind attorneys, law students, and consumers alike who may wish to access the Bar website and its Bulletin and archives. For now, the OSBA has posted, as an emergency measure, the entire Bulletin in PDF. Though now somewhat readable, it is still a headache-inducing, accessibility nightmare. For those of you who dare attempt to read it with screen readers and braille displays, I salute your bravery. (But if you really would like to read the article, email me and I can send you my word file of it. I can’t post something I wrote and NOT give you a way to read it!) For the adventurous, though, You can find it in the May, 2019 edition of the Oregon State Bar Bulletin.
A very similar article written by Mr. Duboff and myself was also picked up in the April 2019 edition of the New York State Bar Association Journal, but you probably can’t read that one, either. This is not an accessibility issue, though. What I can access of the NYSBA website is actually fairly accessible. But the journal is behind a login wall for members only. As a courtesy, authors are usually given free copies of publications they contribute to, and I asked for a digital copy. This is what I was sent:
I can’t read this article, either–at least not with significant effort and a top notch OCR scanner. So we’ve got a ways to go on this topic, don’t we? But I will keep chipping away as best I can.
This article is a bit of an adaptive tech geek-out for those who are blind or Deafblind who want to access eBooks with Braille.
This article I wrote for Rooted in Rights was a tough one for me. I ended up rewriting it 3 times. The first version I turned in to editor Emily Ladau was over 3000 words long and was a meandering thing full of caveats. I did not want to put my mother in a bad light, and I felt like I could not tell my personal story (a requirement of the piece) without her. I knew I needed to slim it way down. Parts I cut out were:
- That I grew up in the 70s and 80s, and even though there was a lot happening in disability civil rights in places like Berkeley and Denver, none of that made it to suburban Iowa or Nebraska.
- That the word ableism wasn’t even really a thing yet.
- That there was no internet and significantly less local organizing. Families back then really only had the medical and educational professionals to tell them what to do.
- I went to kindergarten in 1975, the year PL 94-142 was passed (now known as the Individuals with Disabilities Education Act). Having teachers of the visually impaired and blind kids with IEPs in regular schools was brand new.
- “Maximizing vision” was the best practices at the time. This has somewhat changed since then.
What I also wanted to say, is that although in my mother’s time, the conditions were as above, making it challenging for parents to recognize that they maybe needed to get rid of oppressive attitudes about disability (or even understand that they had oppressive attitudes about disability), these excuses are not nearly as viable today.
Today, when a parent has a disabled child, it is much easier to find accurate information, learn about disability as a civil rights issue, and connect with adults with disabilities to find role models. Although I recognize that inherent ableism will not go away overnight and there is a learning curve to understanding and accepting a disabled child for who they are, there is really no excuse for parents to still hold the life-long poor attitudes about their disabled children that they did in the past. Self-Advocates have worked hard to reach out and be welcoming to parents and families. Information is readily available. Its not perfect, but support is out there.
However, I still see parents hurting their kids with their ableist and unaccepting attitudes. I still see parents who treat adults with their child’s disability with loathing and disdain and I still see parents forcing their kids to “PASS” as not disabled (or less disabled) using methods that are unworkable at best and cruel and abusive at worst.
Instead of using the internet as a tool to reach out and learn from the disabled community, I see parents using social media as a way to martyr themselves using their “difficult” special needs child as a prop for how wonderful they are and how worthy of praise for putting up with such a kid. They display their child to reach these ends without any respect for the child’s privacy and understanding or empathy for their child’s point of view.
Every once in a while, I am asked to meet with a parent support group. I tell them, I DO NOT DO support groups. I am not a counselor, I do not care to sit and listen to parents whine and cry about their hard life with their disabled child. What I will facilitate is Information Exchange Groups. I can help with information about learning alternative techniques for sensory impairments. I can help with learning to take control of an IEP meeting and know your child’s rights. I can help you learn to advocate for reasonable accommodations. I can update you on tools and technology are available, etc. Why should I listen to you whine in fear about how your child may never go to college or live independently or have a family when I know that is a wrong assumption and I can show you hundreds of examples of people with disabilities who are doing those things successfully and we can talk about how they do them?
For many families, getting this information is exactly what they need to move beyond the fear (and need for whiny support groups) and get past their ableist attitudes. If those families keep working on it, they will be fine. But then, there are the others. Families who really DO NOT WANT TO KNOW the solutions to living in the world as a disabled person. Who don’t want to meet and accept successful adults with disabilities and who don’t want to be told that whining and martyring yourself on the cross of your child is damaging. When this happens, my goal changes. I focus on the kid. I try to give that kid (sometimes adult kids) every opportunity to obtain the skills and resources they need. Because when you find yourself in a family like that, you need to RUN AWAY as fast as you possibly can.
Luckily, there is a community of disabled adults who will be there to support you.
From my “fitness blog” at Skate Therapy: