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Thursday, August 3, 2017

In the Age of Mainstreaming, Being With Other Disabled Folks Is Still Important

In my experience as a student with cerebral palsy in a mainstream school, I noticed how often educators discuss the benefits of disabled students spending time with their “typical peers”. Certainly, the opportunity to go to school alongside non-disabled classmates is important because it is valuable to be among all kinds of people. School should be as close as it can be to a microcosm of a larger, diverse community. But as mainstreaming has become “the golden rule,” I have observed that “inclusion” often comes at the price of many disabled students never encountering another student with a disability in their entire school careers. When decoded, “inclusive education” has come to mean for so many disabled folks, being the only student (or one of the few students) with a disability in the class, in the grade, or sometimes in the whole school. In elementary school, I was the only student with a physical disability. In high school, I was one of just three students with a physical disability and the only student using a power wheelchair. I exceled academically in my classes and people were generally kind to me. According to the tenets of inclusion, I am the ultimate “mainstreaming success.”

But no one ever talks about the isolation that comes with being one of the “only ones” in your situation. No one talks about how lonely it is when other kids are planning their after-prom parties and weekend underage drinking soirees while you are mentally measuring out how many ounces of cranberry juice you can drink at lunch in order to get help using the bathroom at a time that doesn’t cause you to miss class. While you are silently praying that your bladder doesn’t let go before that convenient time. While you are wondering if your desk will even be set up on the first day of school or if you will instead have to awkwardly park your wheelchair in an empty space at the front of the room. Educators, with great intentions, have begun to focus so much on the “enrichment” that comes with being alongside “typical peers,” that they often forget to consider the tremendous value that disabled youth experience when they have the chance to be alongside other disabled youth.

It’s simple if you think about it. When you are the one who is “different” most of the time, there’s something joyful about seeing another person who looks like you, who knows what it’s like to live in a disabled body. While disabled people do not automatically befriend one another, I believe we share a certain kinship that comes with common experiences. I was lucky to grow up with parents who valued helping me meet and spend time with other young people who had all types of disabilities. Some of those people are my friends. Some of them are not. Disabled people, like all others, represent the entire spectrum of human qualities, good and bad. But I’ve learned to appreciate each of those people, because at the end of the day, we share so much. We all know what it feels like to encounter discrimination. We know the “paratransit blues”. We can swap stories about waiting for hours in the orthopedic surgeon’s office. We can swoon over the new line of colors for power wheelchairs. I grew up always knowing that others with disabilities were out there, and that I was never alone on the topsy- turvy journey of being a young person with a disability. For that, I am forever grateful.

But it breaks my heart to know that many others aren’t so lucky. The extreme emphasis on “mainstreaming” in our culture often sends the message that the most “successful” disabled kids are always surrounded by “typical” peers. The fewer programs for disabled kids they join, the better, says society. The more they shun the markers of disability, the more gold stars will land on their shirts. The tragedy of this message is it implies that it’s not OK to be with people who are also disabled, because in this view, to be Included is to proclaim that you are not one of “those kids.” Think about how absurd it is to deem a child “so well adjusted!” for avoiding other disabled people. Doing so teaches disabled kids to internalize the ableism they tell their non-disabled peers to challenge. It’s not enough to ask non-disabled people to end their ableist practices if we do not strive to end the ableism disabled folks have been socialized to show towards each other. In striving to do this, we must also resist what I will call the “impairment hierarchy,” which often results in people with physical disabilities insisting that they are “not like” people with cognitive disabilities, people with cognitive disabilities declaring that they are “not like” those with psychiatric disabilities, and so on. We must all work together for justice without perpetuating among ourselves the prejudices we expect non-disabled people to erase.

For the entirety of my “free and appropriate public education,” I rode the short bus. I use the term not in a disparaging manner, but in an affectionate one. While the bus itself is something of a symbol of oppression, the grand contradiction is that for me, it was also one of power. In the hot, definitely hazardous stank of that ancient yellow school bus, I often experienced the peace that I imagine a gay person feels upon walking into a gay bar. I was safe, certainly not from crappy tie downs or detached mufflers, but from the pangs of loneliness that come with being “different” all day. I was free to moan about how awful it is when your muscles are too tight to let you pee without worrying about making people uncomfortable. I could complain about my parade of incompetent aides without having to explain why I was upset. The bus was not a place for educators to emphasize how “they didn’t even think of me as disabled!” On that bus, I realized that I am disabled, and owning that doesn’t make me inferior.

I experienced that same peace during my summers at a camp for kids with physical disabilities. My fellow former campers, who I think of as “siblings by circumstance” are a tremendous support system for me. They share the frustrations of being unable to drive. They know too well what it’s like to restrict your fluids for lack of an accessible bathroom. What it’s like to know grief at an early age and to sit with the brutal truth that the same disabilities which strengthen us and bring us together can also end lives too soon. But it’s not just challenges we share. There are also joys, only fully understood by those in the “same boat.” The ecstatic rush of finding the right job after facing repeated discrimination. The incredible freedom of being told that as of the first day of tenth grade, you no longer need a 1:1 aide constantly acting as your shadow. The moment when you’re dancing with a group of disabled folks and you realize in some ways, you are not “just like” your “typical” peers… but you truly don’t give a hoot. These mutual experiences are ties that bind.

What I’ve learned is that mainstream education has been a privilege, especially given that the option was denied to disabled students barely older than I am. I have family members and friends without disabilities who I cherish and treasure with all my heart. But in the age of mainstreaming, we cannot interpret inclusion to mean pushing our disabled peers away. We need people without disabilities. We need people with disabilities. Ultimately, we just need people. What a novel concept.

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.