Before I had a kid with disabilities, if you asked me what "discrimination" meant I would have mentioned prejudicial treatment of someone due to race, gender or sexual preference. Then I had a kid with disabilities and it became very apparent just how discrimination affects them, too, along with adults with disabilities.
This is on my mind because yesterday marked the 25th anniversary of the creation of the Americans with Disabilities Act (ADA), which says that persons with disabilities cannot be discriminated against in employment, public services, government, transportation and communication. The ADA applies to public programs as well as private ones that operate in a place of public accommodation, including recreational programs, camps, hotels, zoos, parks, gymnasiums and other places of health or recreation.
In many ways, in countless ways, the ADA has been a game-changer. A powerful Washington Post by disability rights scholar and legal activist Robert L. Burgdorf Jr, Why I wrote the Americans with Disabilities Act, clearly lays out the appalling conditions that existed pre-ADA. He notes, however, that the "ADA is not a panacea for people with disabilities," and that we cannot ignore the fact that there are major gaps in enforcement of the law—including some entities "I-won't-do-anything-until-I'm-sued attitude."
As a parent and a blogger, I am well aware that ADA is not a foolproof guarantee of accommodations. I think back to stories in the news, including the gym that at first refused to host a birthday party for a boy with Down syndrome. Or this story about a four-year-old girl with spina bifida in Missouri who uses a stander; little Izzy couldn't attend a local pageant because the stage was inaccessible. Or the one about a teen with cerebral palsy who took the DIY route for getting automatic doors installed at his high school (school buildings built before 1990 do not have to retrofit facilities if it results in undue financial burdens).
You might recall these stories. If you have a kid with special needs, you've probably lived some versions of these stories. We've mostly run into challenges due to toileting matters. The ADA guidelines expect child care providers to make "reasonable accommodations" for toileting. Depending on circumstances they may or may not have to diaper an older child who is not toilet trained because of his disabilities. We had a disturbing run-in last summer at a hotel's Parents' Night Out program because Max wasn't able to independently use the bathroom. Over the years, Max has been turned away from other programs and camps for the same reason.
Could we have taken legal action? Of course. Did I have the time that would have entailed, time that would have taken me away from my responsibilities for Max? Not so much. Would we have won? Who knows but my guess is, no.
What the ADA can't resolve is the persistent prejudice in people's hearts and minds that kids and adults with special needs are fundamentally very different from the so-called typical population, and that accommodating them is a burden and a beast. Kids require care, period. Some need more help than others. It's not so challenging or, necessarily, costly; it starts with having an open mind.
With social media, parents have a chance to speak out, raise a ruckus about injustice and help the world see our children's abilities. With the discussion raised around the ADA's 25th anniversary, I hope yet more awareness is raised—especially in the conscience of our country to do not just what's fair but what's right.
Also check out:
8 ways to include kids with special needs in programs, events, classes, camps, wherever
Image source: Flickr/Zach Frailey
I would also like to see more protocol on how to teach 2e students. Misunderstood as we are, some schools just don't know how to handle us. Yes, it can be painful for an able-bodied person to sit through an exam. Yes, the verbally gifted student needs more time. While on this topic, I think AP/honors teachers should receive disability training.
ReplyDeleteThanks Ellen! You captured so many of my mixed emotions. Mostly though, I'm incredibily grateful that I didn't know life before ADA (I was 11 in 1990), because the law (along with determination, stubboness etc) has allowed me to work, travel, play, and be a productive member of my community every day. Like you, there were a few negative attitudes and discrimination along the way, but mostly the biggest assest was being able to use common sense. Most of my accomodations were always common sense, and that remains true in my work enviroment today. In some ways, I wish I would have challenged those who didn't want to accomodate me in school, but I always chose to remain grateful for those who saw me as capable and able to be in the same league as my peers. Today, with a Masters degree, and in a public management position, there is not a day that goes by where I'm not reminded of the gift my community has given me by treating me with the same expectations as my peers. That is not to say, however, that I don't notice when a local business blocks the accessible parking spaces with flowers. I'm human after all.
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