Friday, June 30, 2017

Medicaid Is In Danger. It Matters.

Twelve years ago, when I was 12 years old, my best friend Cara and I created a column in which we pretended to be “superheroes,” Spaz Girl and Stumblina. We would crack ourselves up writing stories about our adventures and make jokes about how we would definitely trip over our capes and fail miserably at saving cats from trees. I remember laughing together that with our motor skills, a cat would probably save us. Flash forward and we are 24 and 25, working together to save something for real. It may not be a cat, but it sure is important. We are working together to save Medicaid, the government healthcare program at risk for serious cuts under recent government proposals. Cara now works for the National Council on Independent Living in Washington D.C (NCIL) and I couldn’t be prouder. She and her colleagues have participated in multiple actions with national ADAPT, storming the Capitol to tell our legislators why Medicaid matters. I’m in New York for the summer, doing the best I can to share accurate information about Medicaid and how it serves as a lifeline for people with disabilities. I am also in graduate school at the University of Illinois, studying to be a social worker. Working together with my friends is always a blast. But for once, we’re not trying to photoshop crutches onto a poptart for a disability awareness breakfast. We’ve dusted off our capes to save Medicaid and we need your help!

Why, you may be wondering, have we sprung into action? What’s up with Medicaid and how does it affect us? Medicaid, created in 1965, is a government program providing health coverage for low-income seniors, children, pregnant women, and people with disabilities. With the Medicaid expansion, some non-disabled adults who are low income are also covered. Medicaid helps so many Americans in so many ways. Medicaid covers 49% of all births, 33% of all children, and 64% of all nursing home care (Champaign County Healthcare Consumers, 2017). Medicaid helps fund the special education system, providing nearly 4 billion dollars in reimbursements. Medicaid supports Americans in ways that so many don’t even realize.

I could go on about the many populations Medicaid serves, but as a disabled woman who needs Medicaid to survive, I am going to focus on how Medicaid is essential for people with disabilities in your community. I was born with cerebral palsy and my brain was injured before birth. My disability affects my coordination, balance, and motor skills. I use a wheelchair to get around and I need help with activities of daily living from bathing to getting out of bed. Medicaid covers personal care assistance so I can hire caregivers to help me with those tasks, an expense not covered by private insurance. I am fortunate to have a family that will help with my care, but Medicaid-funded caregivers give me independence from my family and will help me remain in the community when my parents cannot care for me. Without Medicaid, I would be in a nursing home instead of out in the world with my friends and family. I will work as a social worker when I graduate. But the fact is, no salary or private insurance plan for my parents or for me could possibly cover all of my medical expenses. Ironically, unless one is extremely wealthy and can pay out of pocket, Medicaid pays for nursing homes too. So, any threat to Medicaid basically tells sick and disabled folks they shouldn’t exist.

A low-ball estimate for personal care services is $32,000. My wheelchair costs $30,000. The Botox treatments I receive to prevent further costlier surgeries are roughly $25,000. Private insurance either covers these costs partially or not at all. Wheelchair: depends on their mood. Botox: partially. Personal assistance: Nope. Paying out of pocket would bankrupt most working folks, and definitely me. Medicaid comes in where private insurance and work earnings can’t. The ignorant people who think it’s as simple as “get a job” ought to know that without Medicaid, I couldn’t afford the help I need to go to the job. Medicaid is a lifeline, plain and simple.

In the days since I appeared in a video by Mic News speaking out against proposed healthcare “reforms” that threaten Medicaid, I have encountered heinous ableist comments. I have been sharing them widely in case anyone ever tries to claim ableism isn’t real. In the course of arguing with me, my very right to exist has been challenged. People have tried to pit me against other Medicaid recipients who “don’t work” or aren’t disabled and thus, don’t “deserve” the coverage that I do. The fact is, some Medicaid-eligible people can work and others cannot. Many recipients, disabled and able-bodied, work hard every day and still can’t afford other health insurance. Think of those who work in service industries to help us, but only make $12 an hour. Those who “don’t work” may be unable to due to their own illness or because they are caring for a sick or disabled family member. My own mother, the most selfless, hard-working woman on the face of the Earth, gave up her own work life to care for me and make sure I was properly supported in mainstream school. There is no room for horizontal oppression in this fight. Human beings should not have to prove their worth to stay alive. Yes. Stay alive, because without healthcare, people die.

The proposed healthcare bill includes deep cuts to the Medicaid program. Under the new bill, Medicaid would switch to a block grant model, reducing the federal commitment to the program. States would be responsible to cover the costs not funded by the federal government, and if they come up short, they will have to choose between fewer services covered by Medicaid or fewer people covered by Medicaid (caps). If this is the case, people with so many different needs will suffer. Some will argue that Medicaid has been around since 1965… you’re disabled, so why are you freaking? You’ll be covered! Think again. Slashed funding affects all recipients. Caps affect all recipients. The bill proposes fundamental changes to Medicaid. Furthermore, even if I were personally unaffected, this is not just about me. It is about millions of Americans with genuine needs. In the coming days, the character and compassion of our society will be tested.

An individual I will politely call a troll commented on my video yesterday with the following. Ironically, she seems to be acknowledging the role of Medicaid while implying that my life as a disabled person is worth less than hers. The comment reads: 
This is no way to live. I would want them to just give me a lethal injection if I was wheelchair bound. This Medicaid bullshit sucks. Can't we just leave well enough alone. If my child didn't have Medicaid coverage we both would not have a home or any money.” 

This is ableism, people. It’s alive and well. The comment was followed up by this remark, directed at a person who tried to defend the value of my existence.
"In what way is she useful? Not being ugly just genuinely curious. She said so herself she has to have physical help multiple times a day just to do basic stuff."
Kind person: What a nasty comment. There are more ways to be useful than being able to toilet yourself.
Troll: "Give me an example? Unless you're Stephen Hawking, I'm just not seeing it. I think you guys are triggered happy and looking for something to get butthurt about. Does it make you feel good?”

The reality of being disabled is that on a daily basis, we still have to prove our right to be alive. Apparently, based on this woman’s rant, we earn our existence by proving our “usefulness.” I had no idea that transferring yourself, feeding yourself, and showering without help made a worthy life. Stephen Hawking has accomplished incredible things in a disabled body. But his scientific accomplishments are not the reason he deserves life. All disabled folks have the right to “be,” whether we’re researching black holes or going to the beach with our friends. We don’t have to justify the space we take up and the things we need to survive. But, when programs like Medicaid are at stake, and speaking out to save our own lives generates hate speech toward us, it sure feels that way.

When I was 12-years-old, my best friend and I pretended to be superheroes. I never imagined we’d actually need to be. But the time has come. When there’s something worth saving, we don our capes and kick ass.

(PS: If you do, in fact, have a cat stuck in a tree, named "Medicaid" or anything else, Spaz Girl and Stumblina have not given up on past superhero goals. We'll do our best.)

Below is the video from Mic News, made by my new friend Sarah Singer.

Champaign County Healthcare Consumers (2017). The Better Healthcare Reconciliation Act. Retrieved on June 30, 2017 from 

Call your Senators NOW and tell them that the Better Healthcare Reconciliation Act is a threat to Medicaid and to millions of lives. This is not a partisan issue. It is a human rights issue, and as a person who needs Medicaid to live, I ask for your help from the bottom of my heart. Call your Senator.

Content warning for images below: ableism, eugenics, bullying

Image: Facebook comment says- This is no way to live. I would want them to just give me a lethal injection if I was wheelchair bound. This Medicaid bullshit sucks. Can't we just leave well enough alone. If my child didn't have Medicaid coverage we both would not have a home or any money.

Image: Troll says in reply to an attempt to state that the better dead than disabled thought is crap....
"In what way is she useful? Not being ugly just genuinely curious. She said so herself she has to have physical help multiple times a day just to do basic stuff."
Kind person: What s nasty comment. There are more ways to be useful than being able to toilet yourself.
Troll: "Give me an example? Unless you're Stephen Hawking, I'm just not seeing it. I think you guys are triggered happy and looking for something to get butthurt about. Does it make you feel good?

Me being a "superhero!"
Image: My chair affixed with a blue chuck sheet cape that says "Palsy Power!"

Cara being a superhero. A blue chuck sheet cape reads: Spaztastic Justice League, Spaz Girl

Image: A troll says... "This girl in a wheelchair should just stay in bed at home and shouldn't expect to enter society asking for handouts like 'medical care' and 'dignity.' When are people with incurable disabilities of no fault of their own going to pick themselves up by their bootstraps and pay the thousands and thousands of dollars of necessary medical expenses on their own? And they call us deplorable."

To make a point for this vapid human skidmark, I tried to pull myself up by my bootstraps. I only have brace straps. Despite my best efforts, I'm still in bed. #savemedicaid

Image: Me lying in bed trying fruitlessly to "pull myself up by my boot (brace) straps." I'm lying on my back reaching down toward my leg braces and not doing very well. 

Sunday, June 18, 2017

Cerebral Palsy Isn't Progressive...But It Kind Of Is.

Growing up with cerebral palsy (CP), I have always wanted to be as informed as possible about my own disability. Of course, from a young age, I learned the standard elevator speech (hehe, see what I did there?) about how my brain had bled before birth and abra kadabra…here I am. I’ve adapted this explanation many times for various audiences, from little kids in the store who ask if I’m sick to tactless doctors who ask “what happened” to me (For those wondering, so many things have happened. Most recently, I ate a blueberry waffle.) I’ve pretty much read every webpage about CP, and I’m forever enthusiastically reminding people that my overactive startle reflex is  a “CP thing,” not a nervous habit. Yet, as I’m entering young adulthood, I’m learning that no matter how many pages I read, there are so many, there are many things about living with CP that I can only discover by living, and so many moments in which I think to myself— “What am I doing?” This was not in the manual! See: Stuck in a Surehands lift on the ceiling, in my underwear, ran over retainer, got leg stuck in bedrail and other adventures. No book, no doctor, no pamphlet can truly prepare you for all that you will encounter when you become an adult with CP.

CP is generally presented as an early childhood disorder, and suddenly, here you are, an adult with a “childhood disorder”, who missed the memo that you were supposed to disappear at age 21. Most recreational opportunities you previously enjoyed for people with disabilities are no longer available, because you my friend, are Old. Many a time, not even the orthopedic will see you anymore, because you and your worn out hamstrings must go where Old people go, only to learn that no such place exists (See: disappear after age 21). Despite not so subtle messages from service systems to evaporate, and the clear decree from the rehab catalogs that I am no longer cute enough to be in a walker ad, here I sit, Old. It seems like a scary place, beyond 21, and sometimes, it is. But life goes on, and I hope that the things I learn along the way can guide others.

In particular, I want to address the myth that CP is not at all progressive. Every webpage, every doctor announces cheerily: “It isn’t progressive!” Well doc, I’m here to tell you, it kind of is. It is correct that CP is not a true degenerative condition, and I am not at all arguing that my experience is the same as that of a person with a rapidly degenerative, life-threatening disability. However, CP changes with age, and I wish someone had told me that when the adventure began. Age 3 with CP is not the same as 8 with CP, or 13, or 20. Years and years of compounded spasticity pulling on your bones catches up with you, and it’s important to acknowledge that. I always went to physical therapy. I go for Botox to control spasms. I rock leg braces with a butterfly pattern that I love. You might say, I did all The Things, and yet, a degree of “functional change” has happened anyway. Just like for any non-disabled person, exercise is important for me, and if I don’t move, my muscles will weaken. But I wish I had known as a kid that CP is changeable, despite the stretching, the physical therapy, and the pretty patterned braces. I’m not suggesting that these things are pointless. They have, in fact, been very helpful in my life. But even so, CP muscles sure know how to get funky, and I wish I had known how much I would have to relearn my own body over time.

My knees stopped bending past 90 degrees at age 12, for reasons unknown, and trying to bend them further is like hitting a brick wall. I can no longer ride an adapted bike and it’s difficult to sit anywhere besides a wheelchair for fear of bending my knees too much. Old pictures of me with my legs folded under me are amusing and confusing these days. I don’t mention the things I can no longer do in order to make adulthood with CP sound miserable. I have plenty of hobbies that don’t involve knee bending, and if anything, the loss of some movement, the aches and pains I didn’t expect, and the ever-slower pace of my walk have illustrated that those living in disabled bodies are remarkably adaptable. We find new ways to do things because we must. I just wish I had known that the changes would come, because for a time, I blamed myself for them.

As my steps slowed, as I fell more easily, as those mischievous knees stopped bending, I struggled with guilt. Some days I still do. A little voice in my head would wonder, Did I not do enough? Is it my fault that I cannot do all that I once did? Have I failed? Gradually, I’ve learned to quell that voice and recognize that yes, CP is progressive, and some of the changes are beyond my control. To all the folks with CP out there who walk a little slower than they once did, use a wheelchair more often than before, or need a few more hours of personal assistance than they had as a kid, you are not alone. In my book, the phrase “CP is not progressive” will always be paired with an asterisk, knowing that 20+ years of spasticity certainly has the power to make one a little achier than before.

And with that knowledge, I have also given myself permission to grieve the fact that I can no longer move as I once did. My days flying around on my walker are gone. Getting carried up steps to go into others’ houses is now reserved for very rare occasions. In many ways, I am looking typical aging of the muscles and bones in the face, except at 24 and not 64. Given that I have never walked independently and I am quite used to needing help, I do not feel afraid of physical decline the way many others do. Perhaps that explains my kinship with elderly people, who face loss of mobility and the vulnerability of allowing others to care for their bodies. I often feel an impulse to tell them that they will be all right, that a place beyond walking is still a good place. That needing help is hard, but also so astoundingly human. Yet, I cannot deny those moments of grief for the fact that this body has changed, that the unending current of spastic electricity pulsing through my body has taken away some movement I once had. I used to deny myself of those moments, because they ran so contrary to the truth that I accept my body in all its wobbly, crooked glory. But I’ve learned that the truth is complicated, and that acceptance of my being does not require me to overlook the reality loss and struggle. That I can be proud of my bulbous, swollen knees that have floated away from their sockets and simultaneously think, “Bend, damn it! Remember when this didn’t hurt?”

CP is progressive and to say otherwise doesn’t tell the whole tale. I wish I had known from the start. But I’ve always known for certain how incredible the disabled body is, far from broken in its stubborn persistence. It endures and adjusts as joints ache, toes curl, and muscles contract over time. As the way CP affects me evolves, I adapt. I find new ways to do things because I must. I ask the universe to give me grace for the changes. And I rejoice, knowing that wherever I want to go, this crotchety bag of bones will get me there.

                                                   Image: me as a little girl feeding a deer at a zoo in a blue manual chair.

                                            Image: Me, circa age 5 or 6, standing beside my sister in a metal walker with red handles.

                                           Image: Me last year standing in a blue walker with black arm platforms and black handles.

 Image: Me, August 2016, seated in my most recent purple power wheelchair.