A journal excerpt from about a month ago. This will probably be expanded to an essay at some point.
When I was 19, I got a period that wouldn’t stop. My menstrual cycle has always been heavy, and sometimes I would bleed for nine or 10 days. So I didn’t think much of it at first. I started to notice a problem in the second week. My bleeding had slowed down to faint spotting, but it wasn’t stopping.
Read the full text on Hardcore Hope.
When I was five or six years old, I sitting in my grandmother’s kitchen, watching the adults cook. My Gram asked me what I wanted to be when I grew up.
I was going to post this on Facebook. Then I realized I want it here so I can link to it in every thread I see this mentioned.
I keep seeing posts in my feed about how “there are more people being diagnosed with ADHD and Autism than ever before. Clearly the problem is our diet/pesticides/chemicals/technology/overmedications/whatever.”
This is ableism and I’m calling bullshit.
Autism is not caused by diet and there’s no actual evidence that it’s caused by modern technology/chemical exposure.
Some ADHD symptoms can be managed by diet. Overmedication is a valid problem. That doesn’t mean diet or medications is a causal factor. Your logic is flawed.
If I see that article about how “ADHD doesn’t exist in France” one more time I’m going to slap someone.
More people are being diagnosed because more medical professionals and parents recognize the symptoms.
Previously, the same people would have been labeled as “problem children” and grown up without the help and resources they needed.
STOP TRYING TO MINIMIZE THE EXPERIENCES OF PEOPLE WITH DISABILITIES.
Stop exploiting the experiences of others for your political/social agenda.
Stop telling people that their experiences aren’t valid because you don’t believe their disorders are real things.
STOP and think about how you’d feel if someone told you that your stomachache wasn’t a real thing because they couldn’t see or touch it. Then think about what it would be like to live with that stomachache for the rest of your life.
This is an essay draft I’m submitting to workshop for Writing 201. The final version will go in the #1000speak link up either this month or next.
It takes me about half an hour to work up the courage to go into the kitchen. My parents and some of the other adults are at the table, smoking cigarettes and bantering in loud voices. I I’m 7 years old, and I hate interrupting. I’m always afraid that someone is going to be angry or that I’m just “a pest.” I work my way through the living room and linger in the doorway, heart pounding. Finally, I sucked in a deep breath and force myself over to the kitchen table.
Why am I nervous anyway? Why can’t I just ask for what I want? People do that all the time. But I can’t. I stay there, watching and listening for a lull and trying to make myself speak. A few times, I open my mouth and shut it again.
Since 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.
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.
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.
The content of this post is now up on my sister site, Hardcore Home.
Just spent a remarkably pleasant hour with a contractor who is familiar with ADA requirements.
He confirms what I’ve been saying: This apartment, especially my kitchen, is not ADA compliant, nor does it meet my access needs.
The apartment was apparently “adapted” and offered as an accessible unit to bring the building into compliance with ADA regs about how many accessible units must be available per total rental units. However, it’s spatially not suited to that, the modifications were done wrong, and it’s generally a mess.
He listened to my needs, took measurements for the kitchen and said he would try to come up with workable solutions.
It only took 5 years.
Next step: Don’t have an anxiety attack about contractors needing to work in here again.