For those of you that have not clue one what ableism is I’ll school you. Ableism is discrimination and oppression against those with disability. It may come in a variety of forms from the serious to the everyday inpracticalities and impossibilities that are thoughtless and wear one down. An example of a serious current issue is the very real threat of extreme budget cuts to Social Security and Medicare. Many disabled people live below the poverty line and rely on these services to barely squeak by in life, yours truly being one of them, cuts to these services could literally mean the difference between receiving mandatory health care and a roof over one’s head to living on the street, no health care, or death.
A less serious example, but still problematic issue that I often face in Boston is the constant hurtle of stairs. The damn things are everywhere. Just to get into the first floor of a building I usually have to climb half a flight of stairs. I am very rarely told about the presence of stairs before arriving at an establishment either and this includes doctors’ offices. For example, after a 2 and 1/2 hour T commute to the oh so trendy Shag Salon in Southie on what had to be one of the hottest days of the year, I arrived utterly sick and in pain to find the salon was on the third floor of a building that did not have an elevator. When stairs are difficult or impossible for one to climb and no one informed you of this because they assume that everyone is able bodied you tend to get fucking pissed off! Thankfully I was able to slowly trudged my way up, but I never went back again. My first appointment with my current therapist was not too long after my first knee surgery and I was still in a lot of pain and on crutches. I arrived to find several stairs I had to climb just to get to the elevator. I was in agony by the time I made it to her office. Assuming that everyone is able bodied because someone happens to be able bodied is similar to heterosexism in the way that it works under the assumption that everyone must be straight because said person in charge is straight. Get it? Good.
There are important deviations of ableism and other -isms to keep in mind. Every oppressed group has these ol’ bugaboos and we’re no different: stereotypes! I’m using my experiences as examples, but stereotypes represent larger systematic problems at play. There are two primary stereotypes/challenges that I face regarding ableistic stereotypes. The first being the paternalism of the system because I am viewed as a child and the second being the desexualization, the fetishization, or the victimization as a disabled woman.
Let us begin with the issue of paternalism and the childlike treatment. Upon becoming disabled I was treated radically different by people, doctors, society, and the system. I am now no longer seen as a human, a person capable of thoughts and feelings and the ability to know what is in my best interest. I am viewed as nothing more than a disabled blob, a child really, who cannot possibly take care of herself and therefore is patronized and left to beg and wait for the bread crumbs that are thrown my way. Two cases come to roaring to my mind right now. The first is the meal delivery program that I use, Community Servings, and the second is my current health insurance quandary.
I am currently a client of Community Servings meal delivery plan because I am often unable to cook for myself or go to the grocery store because of my chronic pain and limited mobility. At first I was very excited about this program as well as furious that despite my multiple inquiries during my knee surgeries I was repeatedly told that no such program existed. As a result I was left to fend for myself when I was so immobile and deep in pain that getting from bed to bathroom was next to impossible. That’s a rant for another day though. Moving on…Seeing as I have diabetes I’m signed up for the diabetic meal plan. Do I receive lots of high fiber veggies, whole grains, and lean protein? No. Instead I get white flour starches, starchy veggies, rarely a green veggie in sight, dark chicken meat, and yogurt and desserts made with cancer and migraine inducing fake sweeteners. I can’t eat anything with fake sweeteners because they bring on a migraine faster than chugging a bottle of Jack. I also have no desire to eat the desserts or a lot of the food in the meals simply because they’re not healthy and they just don’t taste good enough to risk the harm to my body. I often throw out half the high glucose causing foods and then substitute with my own healthier food. In the end I’m still cooking a bit, but this at least helps me stretch my meager $200 monthly food stamp allotment.
After becoming tired of wasting the yogurt and such I finally called and told them that I wanted to stop receiving the fake sugar items. I was then told that because I’m diabetic that I’m not able to make changes to my meal plan and that I need my doctor to authorize the changes. Now take a minute to absorb that. I’m 33 years old and I need my doctor to allow me to eat what I know is best for me. Meanwhile that particular week these people brought me not one, but two frozen meals of fried chicken with mashed potatoes and corn, as well as enchiladas with white rice, but I’m not qualified to make decisions about what I should eat. Apparently I am nothing more than a 5 year old that needs a parent to make my plate for me. Along with this condescending behavior regarding my food this program only delivers to me on Tuesday. There is no time window either. I have to stay home all day on Tuesday and wait for my delivery. I’m not an adult with things to do. I don’t have numerous medical appointments to go to, errands to run, or Heaven forbid possibly do something enjoyable if I feel up to it. I don’t need to register with Mass Rehab that happens to only register people on Tuesday morning. Nope. I’m just a poor, disabled person, ie a child that needs my parent to think for me.
Issue number two pertains to my health insurance. Overall I’m very happy with the insurance that I receiver through the state. I don’t pay deductibles, co-pays, and they’ve approved every drug and procedure I’ve needed. I’ve had some issues, but overall I’ve had a great deal of freedom with this insurance plan. Out of nowhere I received paperwork last month stating that I would be cut off from my current insurance plan and that I’m now enrolled in Medicare. Medicare comes with deductibles, premiums, co-pays, and prescription co-pays. These are all things I cannot afford to pay and will mean that I cannot see my doctors or get my prescriptions. These changes have been made without my consent.
What did I do with my day today? Did I spend hours writing? No. Did I do my exercises? No. Did I make all the financial and doctor related phone calls I needed to make? No. Instead I spent my day on the phone trying to deal with the insurance issue. Of course the problem is not solved and this led to an anxiety attack, migraine, and increased neck pain. Thank you fucked up health care system for causing me more physical pain. Well done! Is there any wonder I have multiple ulcers in my esophagus?
I was finally told that my state insurance is cut off because I now have Medicare, but I can apply for a program that will pay for the deductible, insurance premiums, and co-pays. This application period takes roughly 45 days and may not be in effect by the time my current coverage is cut off. This plan, if approved, will leave me paying co-pays on prescriptions which I currently don’t pay. I’ll now be looking roughly at an extra $30 a month in expenses that I simply do not have. This means I’ll now have to decide which drugs I need most when the reality is that I need them all.
After speaking to Social Security I was told that if I waived Medicare then I would be responsible for paying back the disability I earned while I was eligible for Medicare. I didn’t entirely understand the time frame, but knew this wasn’t an option. My primary concern in all of this since it seems I can get most of the financial issues taken care of is that I doubt Medicare will pay for many of my necessary treatments. What happens to the doctors I’ve established relationships with? I have a lot of specialists and it’s been hard as hell to find them all. I recently found out that my PCP is leaving Boston and it’s going to be next to impossible to find a new one. I can’t possibly hunt down new specialists too. What happens to my mental health care? I see a therapist twice a week. Most private insurance companies would never pay for that, let alone Medicare. What about all the physical therapy I need? What happens when/if Medicare suffers more budget cuts? What happens to my quality of health care then? My current health insurance plan is perfect for me and yet I get no say in the matter because I’m simply poor and disabled. My voice, myself, doesn’t count. I just don’t matter.
When I was merely poor I had no issues with the MA insurance plan, but once I became disabled it was all a new ball game. I lost any and all rights I had. I became a pawn between federal and state agencies. Who will pay for my healthcare? Who assumes responsibility of my gimpy, childlike self? I’m merely a burden that someone must think for. The goddamn paternalism that goes with ableism is fucking maddening! I already experience paternalism from the government as a woman and now I get this shit?! It’s enough to drive me guano and I’m already crazy. All I can say is that Medicare best pay for my therapy, psychiatrist, and meds or they’ll have one more loon walking around, not that they government would care one bit. Hell the Republicans would be nothing but thrilled to have a reason to lock me up and keep me from participating in society and democracy.
Deep breath. Calm and collected now. Zen Jen. As zen as this Jen gets without a vodka martini in hand or a good fuck anyway.
I’ll be back tomorrow for the concluding part of my Ableism piece.
Until then, you foxy readers you.