Disability, Poverty, and Me: The Squeeze

barrier-418450Since November, I’ve been having problems with my toilet and bathroom plumbing. The toilet clogs roughly every ten days and requires professional attention. I have repeatedly been asked intrusive questions about whether medications might be causing me to go to the bathroom more than normal, whether I am ill, whether I am “impacted,” etc. I have stated that there is no medical cause for the toilet problems. I have even stopped putting toilet paper in the toilet. It’s all going in a trash can.

The management company started talking about charging me for the plumber and maintenance visits. The toilet was serviced twice in one week by a plumber who told maintenance that the problem was a defective, failed model of toilet, and that my specific toilet had a broken trap. Rather than simply repair or replace my current toilet, they have decided to get a “special, disabled toilet,” and are asking me to have a medical release form signed by my doctor stating a need for a special toilet due to disability. I do not have a medical need for a special toilet with a powered flusher. I have a need for a functional toilet with working plumbing.

I told them if they charged me or sent me any kind of bill, I would sue them.
This is the latest in a long, LONG line of accessibility problems I have faced since I moved in. However, it’s actualy a step up from the place I had been living before(which is why I tried so hard to be patient and give them the benefit of the doubt.)

My doctor’s office is a low income clinic run mostly by underpaid admins, Nurse Practioners, and social work grad students. The MDs are overworked, and no one has specialized training in how to handle the needs of patients with disabilities who live independently and don’t have access to specialized social programs and “case managers.”

Every time I have needed forms signed having to do with disability, they have:

1. Insisted they couldn’t sign the form, so I had to call 3 or 4 different people to explain what the form was and that it was not for a social security evaluation.
2. Required me to come for a visit before signing the form. (Even though I have told them a thousand times that it’s difficult for me to get transportation and presents a financial hardship to do so.) This usually means I need a family member or friend to help me get there, and must do it on their schedule. Public transportation requires its own set of hoop-jumping and I get a migraine from travelling by bus.
3. Been booked out two months solid so the only appointment I could get would be beyond the timeframe when I needed the form signed.
4. Lost the form and not had it when I got there despite numerous phone calls from me asking where the form was and if it would be ready. This means I always have to ask for forms to be sent to me and then pay for copies and send them to the doctor’s office myself, EVEN when there is an option to have the form sent directly from the source agency.

Every. Single. Time.

Why don’t I switch doctors?

The short answer is income and travel distance.

Going to the doctor’s to get the form signed wouldn’t be a big deal for most people. For me, a doctor visit is a complicated process of jumping through hoops, navigating conflicting schedules, financial strain, anxiety and…you guessed it…exhaustion.
I explained all this to the management company and they blew it off.

“There’s no reason to worry. Your doctor will sign the form. Why wouldn’t they?”

This is where I stopped arguing. I’ve learned to pick my battles. They will spend about three weeks faxing and refaxing the form to the doctor. Then come back to me and say they couldn’t get it signed and ask me to call myself. Which I might do if I actually had a medical need for a special toilet. I don’t. ALL I NEED IS A TOILET THAT FUCKING FLUSHES.

This happens because the system is set up to make people who need services or accomodations give up.

I’m poor. Wheelchair accessible housing is rare and impossible to get into. There was a six year wait list for this apartment. I depend on the goodwill of this management company.

The system wants me to stay down. Stay afraid. Remember my place. Feel desperate.

Well, what the system fails to understand is that it made me. I was born fighting it.

Tired as I am, I’ll continue, because the alternative is to lay down and die.

Fuck that.
I know I’m not the only person caught in this horrible cycle, and the only thing I can do, the only way I can help or change anything is to continue writing about these experiences.

This is what it means to be poor and disabled in America. People call me lazy. People I’ve never even met assume that because I get a government benefit check and am using a wheelchair, I get everything I need on a silver platter.
No.

I have to fight for a working toilet.
I have to justify my need for a working stove, functional cabinets, and privacy in my own home.

I have to fight for things most people have never even thought about.

And I have to do all this with a quarter of their physical stamina and resources, while battling depression, mobility problems, and chronic pain. After all that, I still have to find a way to live my everyyday life, finish my projects, and write books. I have to be Superwoman.

Okay then. Bring it on, 2016. I’m still going to crush you.