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!
This is fantastic. And SPOT. ON.ReplyDelete
This is so amazingly amazing.ReplyDelete
Having been a person with a disability for 29 years, you hit the nail on the head with this one.ReplyDelete
Brilliant description. Details differ from place to place, but the overall picture is terribly accurate. What do you think is the most likely remedy? Should we try to make the service systems simpler and more generous, or should we be teaching disabled kids about the adult world much earlier, so it's less of a shock when you get there?ReplyDelete
Thank you. I think it is very important that we help young people understand these barriers earlier, but not because we should say it is what it is. We should help them understand so that they can be prepared to advocate and fight for change. I really believe that change will begin with making the issue visible and mobilizing young people especially to put up a fight. The system absolutely needs to be more generous, because in my opinion, getting people the care they need without trapping them in poverty isn't a matter of generosity, it's a human right and a moral imperative.
a supplemental needs trust would allow you to keep more than $2000 and keep services... just sayinReplyDelete
Hi. Thanks for your feedback, but I'd like to point out some things about SNTs...Delete
1. They require a guardian. The person with the disability does not control the funds.
2. Funds come from what family/loved ones set aside, there is not an opportunity to save one's own money.
3. If the disabled person dies, the money goes back to the government, which limits the ability to leave things to children and loved ones.
4. SNTs cost about $4000 to set up.
5. In order for an SNT to work, families must have something to put in them. So families who are already struggling financially will not be able to fund them.
So SNTs are a good supplement for those with the option, but they don't provide a lot of self direction and still perpetuate dependence on family. Disabled people need a way to earn their own income without being punished.
Theres a difference between a gaurdian and a trusteeDelete
you're right. I meant trusteeDelete
Excellent and insightful! Thanks for sharing your perspective.ReplyDelete
Can I just say that I just discovered this blog and I love it! I have CP too and I'm turning 21 this year, meaning... disabled adulthood here I come. I'll definitely be coming back here lookin for advice.ReplyDelete
I just discovered this blog and I love it! This post is so spot on. I'm turning 21 in November and this stuff is staring me in the face. It annoys me to no end the things that I think I could learn to do for myself if someone would just tell me how. I'll definitely be coming back hereReplyDelete
Thanks! I appreciate itDelete
Great blog post! While I myself am not disabled, my husband is. He was in a major motor vehicle accident in 2008 and ontop of bodily injuries suffered a stroke his first night in the hospital. He was only 26 at the time. Boy did things change. If we hadn't gotten together and eventually married after that, I don't know how he would survive. Disability payments aren't enough to secure a house over your head let alone take care of medical insurance. I work as a professor at a community college. Community colleges are much more open to disability services within that office, but other people on campus are so closed minded. I wish more people would be more considerate of us all. Disabled or not. Keep up the great blog. You've definitely got an audience here. And I teach business so start your own business around what products or services you see a demand for for disabled individuals. There's a market to be had there!ReplyDelete
Thanks so much for visiting my page and hang in there. Solidarity!Delete
This really made me feel better about things I am 26, and i had to nearly die, before i could make the case management people do what i wanted, and even then i have had three personal assistants in a six month period. THREE, one of whom quit after the first meeting apparently i was too `abrasive` for her tastes. So thanks
Thanks for reading. Hang in there. I know the feeling of dealing with buffoons. You are not alone!Delete