This started out as a Facebook status in response to all the great feedback about my article "Being A Grown Up Is Weird: On Being 22 and Still Disabled." It turned into its own little love letter. I am so thankful for all the support and I hope you will keep the ideas you have read on this blog in your mind and heart. Keep fighting the good fight.
July 23, 2015
From my Facebook
"Thanks so much for all the great conversation and feedback on my latest piece. Some people may be hesitant to read, because such struggles are labeled as "depressing." It is a fact that many of the social and economic barriers placed in front of people with disabilities are very sad. But in order to make positive changes, it is sometimes, and often, necessary to talk about difficult things. Pretending these barriers don't exist because they don't go well with tea and cookies is not constructive, and simply hides the real-life struggles of so many people.
So, let's talk about these issues. They can be very sad, but they can also ignite powerful discussions, build solidarity, and make a "disabled people's issue" a "people's issue." I don't want people to come away from this article feeling sad, but instead feeling like they have found something in society worth changing. I hope my crippy cartoons made you laugh, but also made you understand the serious issues behind them. I hope it inspired you to find other people who "give a damn" and to use that energy to begin the long process of fixing these archaic service systems. You might not have a disability, or even know anyone with a disability, but we still need you in this fight. If you have ever loved anyone or wanted a good life for yourself, these issues are relevant. Of course, I am angry that our society has allowed these issues to take shape, but I am hopeful too. Hope comes from putting hard things out on the table and working together to change them. I also want anyone reading this to understand that being honest about these barriers does not mean being disabled leads to a miserable life. I am proud of my disability, and it has brought more good to my life than bad. But I am not proud of the way disabled people are undervalued and overlooked in the world. Life is always worthy, but we can't stop asking ourselves as a society to make it even better, for ourselves, our loved ones, and for others that we have never met. A lot of people have asked me "what can I do?" to help with some of this. The issues will not be tackled overnight, but you've taken a great first step in reading about them. In the meantime, I would suggest this:
- Share these types of stories, read disability news, blogs, etc. Write about these issues yourself. Making noise around these issues will help bring attention to them.
- Write to elected officials about issues like Medicaid reform. Talk about them until those in office can't ignore us.
-To those without disabilities involved in healthcare and personal care assistance, making a conscious choice to provide compassionate, competent services is a small act that can turn the tide in a big way.
-To those without disabilities anywhere, in any community, in any field, understand that disability rights are human rights. Speak with us, not for us. Together we can change these policies, and the attitudes behind them.
-Finally, to my brothers and sisters with disabilities, make yourselves seen and heard. Sometimes, talking about this stuff feels pointless, because the system is so daunting, but remember that your voices matter. Our voices and our stories matter. And if someone tells you they don't, remember that no one else has the right to put a value on your life. Have high expectations for yourself, even when the world does not. Demand them. I will be right there raising hell beside you."
My name is Kathleen Downes. I blog about my life in a squeaky purple wheelchair. Seatbelts optional.
Thursday, July 23, 2015
Tuesday, July 21, 2015
Being A Grown Up Is Weird: On Being 22 and Still Disabled
I am 22. In the world of disability, that’s shorthand for “that time you aged out of everything.” While I am proud and grateful to be an “adult,” the coming of the 22nd birthday represents the beginning of a strange journey with lots of (unclear) signs and arrows, with enough confusion to make your party hat go a little lopsided.
As you continue down this shadowy path, those around you seem surprised you still exist. Much like Santa, the Easter Bunny, and the Tooth Fairy, the Disabled Adult is largely treated as folklore. By now, that Medicaid waiver has also evaporated, as your effort to convince the program that your crushing medical expenses do not magically disappear when you turn 22 has failed miserably. With your waiver options declared a thing of youth, you are marched onward into the land of Medicaid for grown-ups. This is something of an amusement park of social services, and the entry fee constitutes most of your income.
Image shows the stick figure, a disabled adult, sitting before a perplexed Santa and Easter Bunny. Santa says, "A real live disabled adult? I have to admit, I thought you weren't real." Heading says even Santa seemed starstruck.
According to the logic of this new adventure park, in order to qualify for the programs that allow you to get out of bed, wipe your butt, and buy a new wheelchair, you must have $2000 or less in your name, because evidently, anything more means you can pay out of pocket for thousands of dollars of annual medical expenses. The fact that living a life requires funding for a lot more than medical expenses will be seemingly overlooked. When you call out the absurdity of this policy, a voice from the sky will remind you to be grateful for that wheelchair Medicaid paid for five years ago. Remember, it will say calmly, you have a wheelchair. There’s no need to fret about food, clothes, movie tickets, or anything resembling fun. Good disabled people smile sweetly and sit in their homes, leaving only for medical appointments.
Heading says: Welcome to Medicaid Land- where the sky (crossed out and replaced with $2000) is the limit. Wheelie stick figure is glancing at signs for various misfortunes such as a poverty trap. Able- bodied figure says: Hugs are available but only from an in network provider.
On the bright side, this forced poverty has allowed you to qualify for in-home personal assistance, as the state has generously recognized that you still need to get dressed. However, despite reiterating that life carries on 24 hours a day, and that the average person should pee six times a day, you will be offered about six to eight hours of help daily, as though your disability disappears when the sun goes down. Hiring people to assist you will be the next great rite of adulthood. At first, you write your job ad with enthusiasm, and delve into Google, confident that people will be anxious to fix the wrinkles in your knee socks, clean crumbs out of your chair, and listen to you sing in the shower. But as you wade deeper into cyberspace, you will see that this endeavor is a little more than you bargained for. The Internet is teeming with bubbly young people who “love to babysit special needs kids” or “would be happy to run errands for your elderly mother.” Your query for those with “a passion for lifting disabled adults” returns far fewer results. There will be whole sites devoted to care at the beginning of life (kids) and at the end of life (senior citizens), but a strange silence will envelope The Middle.
A caption reads: A thorough care evaluation, as our friend decides that he wasn't hungry anyway. A letter reads: Dear consumer, you clearly need 24 hour care. Based on your unique needs, we have allotted you six. have fun rationing them. For help choosing the right basic need to ignore, call our special services line today. Sincerely, your care specialist.
In The Middle, it will often seem like it would be easier to find someone to brush your dog’s teeth than to find someone to put you in your wheelchair and make sure you have pants on. Your heart will leap when you discover Sittercity, then sink again when you learn that it is a hub for babysitting jobs, and not a revolutionary resource network for people in wheelchairs, who like you, have a passion for sitting. Writing an ad to be your personal assistant (PA) is a peculiar task, because not too many people know what to make of the extravaganza that is serving as your arms and legs. It takes a while to write a job description, because “put me to bed for money!” doesn’t sound quite right. When you finally hire a PA that meets your expectations and arrives regularly, it will be very hard to believe she or he is real, despite repeated assurance that she or he is not a hologram. When you have a PA you can rely on to bring you to the bathroom, you may even do something daring, like drink a soda, which in your world, is asking to pee with reckless abandon.
On the transportation front, your school-funded transit to class is long gone, and if your disability prevents you from driving, paratransit will clunk into your life. Paratransit is your unreliable school bus’s evil cousin. On paratransit, you will find yourself rejoicing if the bus comes at all, never mind on time. The bus has thirty minutes to arrive, a so-called window, while you, the person with mobility impairments, have five minutes to bolt to your door. On a good day, you will be able to wipe the cobwebs off your knees in five minutes. Thus, as soon as the “thirty minute window” opens, you are forced to press your face against the window, terrified that if you bend over to pet your cat, paratransit will speed into the sunset and declare you a “no show.” No shows on the part of the driver are ordinarily attributed to Bigfoot crossing in front of the bus, vaguely described accidents, and broken GPS devices. After a few years of ridership, it will become clear that paratransit is the preferred bus line to Hell.
In the midst of all these stops on your tour de adult, there are regular reminders to get a job, and smiley employment campaigns stating that “your attitude is the only disability!” When you express interest in a job, even with a stellar resume, you must prepare yourself for the shifty eyes and “erms” that follow when the potential employer realizes your “situation.”
Image shows a wheelie stick figure left out of a job fair because of stairs. Caption says Surely his attitude was the only barrier, as onlookers tell him that he could fly up the steps if he tried harder.
Image above shows the wheelchair of fortune wheel, with chances to win various misfortunes such as bankruptcy. Caption says Charlie could hardly wait to tell 'em what they won.
Should said employer decide to hire you, you swing between a rock and a hard place, as your first two thousand and one dollars disqualify you from receiving the PA that gets you ready for work. When you point out that you do not want to spend your entire salary on home care, and might instead, like a house, the voice from the sky will proudly show you some cardboard boxes that are within your budget. With a hearty laugh, the voice will remind you that if you think of them as Able Boxes, living in this cardboard dwelling is quite charming. Any other thought is the product of a bad attitude.
Image above shows a stick figure looking at "real estate" for disabled people represented by cardboard boxes with a cheery sales guy. He can't afford a refrigerator box so he settles for the smaller toaster oven box.
Image below shows a crowned fairy godmother offering a wheelie some more paperwork, because she is out of ponies. The heading reads: The case manager was much less charming than the fairy godmother.
A case manager, who reminds you that God is now an out of network provider, soon replaces your fairy godmother. An appointment with Him will require a referral and two hours of lengthy paperwork. Then with a bippity boppity boo will come…. more paperwork.
I am 22 and I am disabled. I am an adult. I am not as cute and cuddly as a toddler. I am not a sage grandmother, just a person trying to navigate “the middle” of this life. I am proud of my disability, and I love the life I’ve been given, but the societal barriers constructed for adults with disabilities make it a challenge. We are here, and we’re not going away. We don’t stop existing after childhood, so our service systems must not be designed as though this is the case. The “cliff” over which we shove our disabled adults is a moral and economic tragedy. There may be a silence about the lives of disabled people who dare to exist in the world beyond age 21, but I intend to fill the silence. And if my very existence, my refusal to be hidden away, is an act of rebellion, then so be it.
Final image above shows wheelie at various ages, birth, 11, and 22, still disabled in each frame. At 92, the stick figure remains the same, and caption says "Still Disabled. Oh, You Get the Idea!
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