From various things I've observed in the news/popular culture and within my own life, I feel like getting on my ol' soapbox and sharing some thoughts. Basically, I usually see an effort made for more inclusivity or accessibility for those who are disabled in some fashion, but I don't see inclusivity and accessibility, at least not without great financial cost. Does that make sense? If not, let me explain.
I was reading an article about how a young woman named Alexis who turned 18 and has a complex disability requiring a lot of medical care. She is being sued by the hospital she has spent much of her life in for trespass because she won't let them move her to a nursing home far away from family and friends. The hospital is working at helping her have access to care, but not working to make sure she has inclusivity. The article by NPR goes in-depth about this and how despite the passage of the Americans with Disabilities Act over three decades ago, people find themselves often lacking the care they are due as someone with a disability.
The article upset me but didn't surprise me. I know plenty of folks caring for children or adults with disabilities (in my personal life and via Facebook groups) and find themselves facing a myriad of issues. Insurance wants them to keep paying copays to the point where they are out-of-pocket two, four, or 10 grand before everything is covered. Individuals want their children to go to a school that can provide services that fall under medical categories (be it ABA, PT, OT, or anything else) and insurance bleeds them dry. That, or I know individuals who want their children in a public school but have to fight for them to get assistance from the school in the form of Paras or other helpful measures. We want our children or adults with disabilities to access care and sometimes that is so expensive it can't be achieved. I know of people homeschooling their loved ones with disabilities to ensure they access a good education somehow, but then they are at home and not enjoying time with friends at school--there's a lack of inclusivity (or put your kid in a school and they enjoy peers but can struggle to learn). Study upon study has shown children and adults with disabilities love to spend time with a wide range of peers from disabled to not disabled, neurotypical to neurodivergent. Yet it is never as easy as doing what the studies show is best.
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| My awesome son! |
Oh, and yes, I have a dog in this fight as they say. Every day our son goes to his school we have a copay until we hit our max out of pocket for him midway through the year or so. Clarkson simply could not be in a public school without it being possible to ensure he has constant 1:1 supervision. My son is sweet, loving, and awesome, but to put it bluntly, he is a massive flight risk. If Clarkson sees something of interest or just feels like it, he'll try and take off running. The boy doesn't understand danger. He'll try and run out of a building, run into the street, or just do whatever he feels like. He also needs an adult with him to ensure he stays focused on a task. Clarkson is a person with many attributes that make up who he is and he isn't just defined by his autism, but that is a major part of him and he needs to have steps taken to make sure he is safe and learning. We love where he goes for school, but insurance wants to make sure they pocket some money from us for him going there.
I do want to give props to agencies and nonprofits that assist people caring for children or adults with disabilities. Thanks to an organization known as Variety we were able to get Clarskson's talker device he uses (and he uses it a lot now, which is great) paid for without it taking a big bite out of our own budget. Other agencies such as the Recreation Council help pay for those with disabilities to go out and do recreational activities with peers. Those agencies are here in Saint Louis, but there are organizations that work Nationwide and other local groups exist too. They shouldn't be needed though. With things like the ADA, you would think insurance would almost totally cover the expenses of stuff like school, devices, and making sure those who are disabled can have full social/spiritual/etc. lives. That ain't the case though, and many people struggle as a result.
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| The media is a double-edged sword, so to speak. |
The media can help, to a degree. More and more shows feature fictional or true stories of those with disabilities be it Autism or anything else that isn't neurotypical. Still, sometimes stories seem to struggle to portray someone with a disability in a manner that doesn't make it their entire personality or ends up stereotyping them. Reality shows that have those with disabilities can avoid that trap, but fall into other ones--e.g. infantilizing or simplifying these people who have many aspects to them but are on a show due to having a disability, and therefore it ends up being a big focus if not the whole focus. It's a tightrope the media walks, but at least it is there when people need to engage in the act of calling up the news to discuss when a school/business/etc. is failing to help them with their disabled loved one. Nobody wants to end up on the news for acting in a manner that harms disabled people. Bad press is a big motivator. It shouldn't be (there I go using that word again), but here we are.
We as a Nation need to make sure those who are disabled can enjoy inclusivity and accessibility in their lives without it costing a prohibitive amount of money. Our country has made steps towards improving healthcare over the decades, with Medicaid helping many with disabilities, and the Affordable Care Act (AKA Obamacare) made strides toward improvements as well. Still, we live in quite a broken system. It isn't going to be fixed anytime soon, but speaking out and being an activist is a good step to take. Whether you care for a disabled person or are disabled, making it clear you won't suffer within this system with silence and will work to improve it is immensely important. Some may want you to shut up so you can be ignored, but make enough noise about an injustice and eventually, they'll have to acknowledge you. Let's make some noise and create some change.
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