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 22^nd 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.

image shows a split of two doodles. one of a person in a wheelchair turning 22, with a cake and party hat. The other shows the person being tossed over a cliff into a fiery pit. the cliff is marked service eligibility cliff. A stick figure on the ledge is yelling "don't forget your nursing home brochure!"

 Disabled adulthood begins quietly. Phrases begin to change. At the dawn of your 18^th birthday, not long after you’ve scratched off your first lottery ticket and tucked away your $2 winnings to invest in an absurdly overpriced piece of Velcro for your wheelchair (you will need approximately 150 more of these wins to make the purchase), you will be invited onto a rickety bridge politely named “Transition.” A tour guide will cheerfully inform you that it is time for your IEP to fall into the abyss below the bridge, and many of your weekly services such as physical therapy, which until now have been school-funded, to tumble into the underworld with it. Unicorns and butterflies will prance around gaily to mark your “transition” milestone, and it will be impossible not to notice that the unicorns seem slightly coerced into performing. Eventually, the tour guide will disappear, because your eligibility for that too is limited time only.

A stick figure in a wheelchair is riding a unicorn across "transition bridge." Heading says At First, Everything Seems Magical. The wheelie is thinking that this whole thing is too good to be true. A nearby sign says get your transition plan today!

By the time you reach the end of the bridge, you are 21, and clinging to the Medicaid care waiver that you haven’t aged out of yet. A select few recreational opportunities, which have now been branded “respite services” (because fun is for kids) have not turned you away due to your elderly age, and you gaze fondly at your world-renowned orthopedic surgeon, thinking at least I have you, my old friend. But alas, despite your secret handshake and tender “thanks for fixing my tibia” gaze, your orthopedic hospital too will ditch you as 21 becomes 22. After all the grueling surgeries together, the itchy casts and the postsurgical Lorna Doone cookies, the hospital too has declared you fit to disappear.

 on the other side of the bridge, the wheelchair using stick figure is in a shadowy forest filled with grave stones for various services such as transportation and specialized hospitals. Sign says confusion that way and thought bubble says well, *S#*! where did the unicorns go?

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.

 Image shows a google search for "people with a passion for assisting disabled adults in a   competent manner" returning zero results.

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.

 Image shows a wheelchair using stick figure as an able ride bus speeds away. Thought bubble says "Wait for me. It takes me 5 minutes to move my foot."

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!

Beyond My Wildest Dreams: Thoughts As I Graduate From College

This weekend, I will graduate from the University of Illinois at Urbana-Champaign, 874.73 away from home. I have always believed in myself, but never in my wildest dreams did I imagine this adventure being a reality. Throughout my whole life with cerebral palsy, I have depended on others to comb my hair, dress me, bring me to the bathroom, and bathe me. When you need others to be your legs and arms, your body and your schedule settles into an almost rhythmic routine with the people who help you. For me, that person was my mom. Although other people had assisted me in my life, no one else knew my patterns as naturally as she did.

When I was finishing high school, going away to college seemed improbable. I knew that I was academically prepared to go any number of places, but my physical reality was daunting. When you have someone who has cared for you with unfailing devotion for eighteen years, the thought of placing that trust with anyone else is frankly terrifying. I assumed that I would go to school and come home at night, which can be an excellent option. But in my heart of hearts, I knew I wanted something new.

I was itching to have the experience of living away from home, like I saw so many people my age doing. I adore my parents, but when you have a disability as severe as mine, you spend a ton of time together, and independence cannot be taken for granted. As someone who is unable to drive, I depend on them to be picked up and dropped off. They know what I did today, because they dropped me off. They know what I ate today, because they cooked it. There aren’t too many surprises. Chances are they know what color underwear I wore today, because, well… they put them on me. I remember thinking, “How cool would it be to be able to call home and tell them what happened last night, because they weren’t there?” Even the thought of last night’s dinner being a mystery to them seemed rather thrilling.

Unfortunately, the resources for people with severe physical disabilities are limited. Especially when you need a high level of physical care, there are more questions than answers, and you generally won’t find a “Getting Your Butt Wiped” resource guide at the college fair. So, I had to do a great deal of my own research, and after poking through many articles and blogs, here I am, living in a dorm for people with severe physical disabilities. Here, I have hired and managed a team of personal care assistants (PAs) to accomplish those day-to-day tasks that most people take for granted. Supervising a small baseball team of caregivers has been exhausting and one of the most challenging things I have ever done—but it has also been rewarding, and a reason to be proud… roughly 2,688 hours of “PA shifts” later.

They say it takes a village. It really does. This wouldn’t be happening without my beloved family, my friends, and all the PAs who have helped me over these past four years. I leave here truly in awe of each of the students with whom I have shared my living space. Some of us may have our personality differences, but each one has taught me something. Each one, like me, has known the frustration of living in a world that frequently has low expectations for people with disabilities. And I am proud as each one accomplishes something beyond his or her wildest dreams.

This adventure has almost as much relied on the kindness of strangers, who may not even remember me. But I remember them, and their love too has carried me to this moment. Just to name a few:

Max, the cheerleader, who pushed me home when my chair battery died.

A group of students whose names I can’t recall who pushed me home when it died again.

The elderly man in a Chicago Bears hat that pushed me across the street when my chair got stuck in the snow.

Matt, from Texas, who held an umbrella over my chair in the rain.

Every Walgreen’s customer who has waited patiently behind me in line.

Derek, who repaired my wheelchair lift, and returned the tip, so I could “buy an extra Christmas gift for my mom.”

Although I may have met you just one time, I celebrate you for affirming the presence of good in the world. Without you, my chair may still me stuck in a hole on Sixth Street.

            The word inspiration will be thrown around a lot when people read my story. They will mean it as a compliment. But I will tell those people this: if I am going to inspire you, I don’t want it to be because I did the same thing people without disabilities are expected to do by default. I want it to be because I helped others see that people with disabilities deserve the same opportunities as everyone else. I don’t want people to call me a hero for getting out of bed and going to school like my peers. That reflects the painfully low expectations for people living with disabilities. Rather, I want them to recall a person who challenged their preconceived notions. Who made them think in a way they never had before. And someone who helped society move towards a day when people in wheelchairs graduating from college are no big surprise. I am not a hero. I am not particularly brave. I am just a person who went to college and had a great time.

            If I am lucky, my story will reach someone, who like my younger self, feels put in a box by the world’s assumptions about “the kid in the chair.” Wherever that person is, I hope that my life will give him or her this message:

You are enough, just the way you are.

Set the bar high for yourself, and always aim for more than the world says you deserve.

Keep your head up, and through the good, the bad, the ugly, and the absurd, remember that you are disabled and you are beautiful. Those concepts are not mutually exclusive.

You will accomplish great things, in spite of AND because of your disability. Your disability is not all of you, but it is part of you… and no part of you is without wonder, without purpose, or without love. I don’t know your name, kid, but I know you can do it. Now get out there and kick some butt.

Image: Me in my orange foam "I" hat at the football game, smiling. Let it be known that I still know nothing about football.

Access Is Always In Season

Those summer days are approaching. Summer is one of my favorite seasons. I enjoy being outside, cruising in my wheelchair on the sidewalks. You may even find me in a pool occasionally, if the water is warm enough for my creaky bones and I can summon the energy to be wrestled into a swimsuit. I use the term “swim” very loosely. For me, it mostly means being held in the water, clinging to the wall because I am deathly afraid of drowning, and kicking my leg periodically so that I can enthusiastically convince myself that I exercised today. But summer is not just about sunscreen, barbecues, and pool parties. It also means the air conditioner is on. This may seem like a good thing, but for many of us wheelies, and others with mobility impairments, it probably means something else sinister: the automatic doors are off.

I cannot even count the number of times that I have rolled happily to a store on a warm day and arrived to find my beloved automatic doors…. unresponsive. It is not uncommon to tell the shop owner or clerk that their door is broken, and to receive the following reply: (sunny smile) “Well, you see, it’s hot out. So we turned it off, to keep the air conditioning in.” This reply is usually seen as perfectly logical and said speaker is probably looking for praise for his defense of the environment. Now, don’t get me wrong. I am very much in favor of saving energy. But here’s the thing.

Access should not vary according to the weather. The arrival of summer should not mean that my ability to access stores and restaurants should be turned off. Sure, someone can open a manually operated door for me. But that takes away my independence, and leaves me reliant on the help of a stranger or whoever may be with me. I treasure the opportunity to go off on my own some days and to be assured that I will be able to navigate successfully.

If I door I can normally operate with a switch is turned off, I am left, crestfallen, to make puppy dog eyes on the other side of the glass until someone feels like grabbing the door. While I appreciate anyone who is willing to hold a door, I much prefer the chance to open it myself so that I can come and go as I please. I understand that shop owners value their air conditioners, but my disability does not come and go with the weather. Never before have I seen a weather report stating cloudy, with a chance of wheelchair. My wheelchair and I are together, in fair or foul weather. Perhaps these shop owners have been subjected to a crappy disability awareness program, and believe that my disability is seasonal. I am sitting here laughing, envisioning a strange alternate universe in which my disability drifts in and out according to the seasons. I can see the elementary school “learning the seasons” posters now… “Winter is for wheelchairs!” And then, bam-- with the hum of the air conditioner my disability gets packed away for the season with the awkward winter coats and snow boots. If only it worked like that. The weather reports would be a lot more intriguing. A scan for palsy levels in the air would surely elicit more interest than those boring pollen levels.

Alas, reality is that disability is “in” year round. Although I have to admit, it would be fitting if cerebral palsy were a hallmark way to welcome the fall season. For someone like me with poor balance, every season is fall season, but those treacherous piles of leaves just increase my likelihood of face planting. If disability only existed in the autumn, the jokes would be too golden. I mean, it’s called the fall for Pete’s sake! But jokes aside, I need accessible facilities during every season, regardless of the status of your air conditioner. CP is always at my side. “Winter, spring, summer or fall… I’ve got a friend” and my right to be accommodated should not go away during certain seasons. Colors, outfits, Internet memes, weird children’s shoes with wheels on them… they go in and out. I am here for all seasons, and my automatic door should be too. If a little air conditioning escapes because of it, business owners will have to cope. The next time they consider turning my access “off” I hope they will remember that disability does not come with an off switch.

It's All Part of The Plan: Living In a World Where Nothing Is Spontaneous

A lot of people wonder what it is like to have a disability day to day. The truth is that it is fun and rewarding and stressful and challenging and ordinary and extraordinary all at once- which sounds very much like a description of life—with or without a disability. For every eye- opening, "no way,” “write a memoir” moment, I probably have five others that are painfully boring and feature me eating pizza or trying to figure out how I didn't notice that I was sitting on my workplace bathroom key for five hours. However, although my life with cerebral palsy includes so many of the humdrum daily encounters as any other life, I will be honest and say there are moments when it is very clear that my disability makes me “different.”

 If there is one thing I could say to summarize what makes my life unique from that of the average 22-year-old it would be “damn, this ‘existence’ gig takes a lot of planning.” In addition to using a power wheelchair, I also have a team of eight personal care assistants who I must rely on to help me with activities of daily living that most people do without thinking. Those are all the tasks like bathing, dressing, going to the bathroom, getting out of bed…basically, if it's a task you thought was reserved for sacred solitude, I probably have company to accomplish it. When someone who you may have interviewed and hired just days before has to put you on the toilet, you develop a talent for awkward ice breaker conversations that would make your college orientation leader look like a total rookie.

But planning your daily activities, the basic things necessary to survive, is no small feat. The word spontaneous may as well belong in another language, because every aspect of living with a severe physical disability is anything but spontaneous. Spontaneity is like that distant relative you have seen in the photo albums and heard a few weird stories about, but never actually met. You know he exists and that others have met him. But when you have a disability, he is just an idea, so you smile, and say that he sounds like a lovely guy… then; go back to figuring out what time someone can help you bathe next Friday. If that cute café you wanted to try can accommodate a wheelchair. If you can get a ride to work, to school, or to a friend’s house. Normally, the only spontaneous thing you expect is the spontaneous combustion of your ancient paratransit bus. I am used to some serious planning. Long ago, I accepted that spontaneity and I, for the most part, would be strangers.

Most days, I am OK with that. But on many other days, spontaneity is someone I would like to meet. At a time of life when most of my peers can make spur of the moment plans, almost everything I do has to be decided on and set up a few days in advance. There are buses to schedule.  There are personal assistants to arrange. Often, I must ask assistant A if she minds coming later than usual so I can go out to dinner but still be home before my shift with Assistant B or the dreaded full bladder.  I have to be conscious of what I order. The second Coca Cola is not the carefree refill it would be in someone else’s life. More fluid equals more pee, and even peeing is scheduled, so I can make sure I will not be squirming uncomfortably somewhere without anyone to bring me to the bathroom.

This is not to make you feel sorry for me or to make you think that my life is terrible. My life is good and happy, but every now and again, I feel a strange longing for a spontaneity I have never had the chance to experience. I think of what a thrill it would be to decide to go to a movie ten minutes before it starts. How weird and wonderful it would be to hop in the car to pay a surprise visit to a friend. To stay up all night because I could and not have to worry about what time someone was coming by to put me in my bed. To not have a schedule so delicately intertwined with those of the people who button the jeans, comb the hair, and take over where my gently used limbs fail me.

There can be something beautiful about the way my fate helps me understand interdependence. The way it helps me to know what it means to need someone and to be needed. The deep, sometimes too-real knowledge of what happens when someone you depend on lets you down. But for all the things it teaches me, it can also be so frustrating.

Most of my peers make all their plans at the last minute. Not too many twenty two year olds want to think about the logistics of a lunch date that will happen next week. Not too many of them are anxious to jump online and investigate which restaurants in the area are wheelchair accessible. To many of them I represent extra time, extra hassle, and extra considerations at a time of life when convenience is most enticing. If the average Joe has a choice between spur of the moment plans and an easy ride in his buddy’s new car or waiting for a crappy accessible bus with me, chances are I will not be his first pick. There are no words for how isolating that feels because the unspoken thought behind it is “it’s so much work to be your friend.”

Sometimes I feel sandwiched between two generations. Young and in my prime, checking my Facebook and listening to all the new music. Planning for my first job and thinking that however far into the future they are, I am already in love with my children. At the same time, in this sandwich, I feel very old. I have to think about who will take care of me and hope that my needs will not be a burden to anyone. I look at elderly people and I feel like in some ways, I belong with them, because I know what it is like to depend on others when the body no longer moves as it once did. I laugh to think that most people’s greatest fear about getting old is losing the ability to walk. I am not afraid when I think of old age, because in many ways, my body is already there.

When I watch other twenty somethings hop into their cars without a second thought, go to the bathroom in two minutes, and change their clothes whenever they feel like it, I wonder if they consider the freedom they have. I’m certain that most of them don’t. They are young and spontaneous. They have the luxury to think about only the next moment. They don’t understand what it is like to live in this “sandwich.” They are young. They don’t understand and I cannot fault them. They don’t understand, but sometimes I wish they did.