A journal excerpt from about a month ago. This will probably be expanded to an essay at some point.
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.
As the title says, I don’t have a legit blog post today. I had something planned, but I can’t start it because I may have to go on hiatus this month. I spent this evening putting together this timeline of problems with my apartment complex. I plan to give this to a disability lawyer on Tuesday.
I’m sharing because the problems I’m experiencing are common in my city among recipients of subsidized housing, especially elderly and disabled housing. It needs to stop.
- June 09 – was offered an apartment at Apartment Complex. At that time I viewed apartment #108 and apartment #110. I was concerned that the kitchen in unit #110 was too small for me to maneuver in my wheelchair. The hallway leading to the bathroom in unit #110 was so narrow that I was unable to get my wheelchair around the corner and through the bathroom door. In unit #108, the bathroom sink was cracked, and the unit did not have a roll in shower. I agreed to rent apartment #108 on the condition that the cracked sink would be replaced, and if I found it difficult to transfer into the bathtub, the tub would be modified or replaced with a roll-in shower.
- July 09 — took occupancy of apartment #108. At that time was informed that Apartment Complex was going to be remodeling all the kitchens and bathrooms in the building. My sink would be replaced then, and modifications would be made to the bathtub so that I could have easier access.
- Early 2012 — I was informed by Gordon (the maintenance person) that the accessible range top and oven in my kitchen would be replaced by a standing stove/oven combination with a slight gap underneath where my wheelchair was supposed to fit. I expressed concern at that time because what was being described to me sounded like I would not be able to properly access the stove or oven. I was reassured by Apartment Complex staff (Gordon and property manager Chuck ) that I would be able to access the kitchen appliances, and if I had any trouble, they would make the necessary modifications “no problem.”
- October 2012 — Renovations began. I was asked to remove all of my belongings and food from the kitchen. I purchased extra shelving out-of-pocket. Was never compensated. I asked for extra hours from my home healthcare agency to wrap and store my dishes. A contractor from the building company helped move everything else from the kitchen into the living room. I was assured several times by both Apartment Complex staff and by the construction company that, once renovations were complete, someone would help me move all of my belongings and put them away properly. My stove was removed, and I did not receive a new stove until December 2012. No work was done on my sink or bathtub. When I asked, I was told that Gordon (the on site maintenance person) would do that work himself.
- December 2012 — the stove I received was not accessible, and I was not able to use the oven or the burners. Family members or home healthcare staff have been doing my cooking ever since. This takes away the bulk of my home-health hours per week. (I am not eligible for Choices for Independence and only receive a small number of hours through Title XX. An increase in home-health hours would mean a co-pay that I cannot afford.) My sister is not being compensated for her time or mileage.
- January 2013 —Several other items, including kitchen cabinets, electrical wiring, and piping, were left incomplete by the contractors. Apartment Complex management (Chuck ) took pictures. The kitchen cabinets have cut-aways with sharp corners. I have cut my toes on them numerous times. I have also sustained two serious injuries to my arms because of the position of the bathroom sink. I did not seek compensation because I didn’t realize the extent of the problem until a year after the initial accident. I am now unable to transfer into a bathtub or car without assistance.
- Early 2014 —Visited by an inspector checking up on what the contractors had done. when I raised accessibility concerns, he suggested that I be offered another accessible unit in the building. One was supposed to be open at the time. I agreed to look at the apartment. It turned out to be #110, the same apartment that I had looked at when I originally moved here. Gordon, Chuck, and I re-determined that the kitchen in #110 is too small for me to maneuver safely in my wheelchair, the hallway is too narrow, and the bathroom door is completely inaccessible to my wheelchair. Additionally, I informed them that I use a bedside commode at night, and I felt the distance from the bedroom to the bathroom through the excessively narrow hallway and door would make it impossible for me to empty my commode independently. I only receive home health services once a week and I do not qualify for, nor do I want, a home health aide in my home every day. Their presence is disruptive, and I do not want to have to depend on another person to empty my commode when I spend most of my time working in my bedroom. This would be a serious detriment to my quality of life and independence.
- February 2015 —Apartment Complex staff (Melinda ) visited me and saw that no work had been done on my apartment since January 2013 and my living room was unusable since my entire kitchen is still in that room. She asked me to email her photographs of the accessibility problems and unfinished work, which I did, even though Chuck already had pictures. Apartment Complex maintenance put a temporary buffer on the bottom of the kitchen counters.(Duct tape and some foam.)
- November 2015 — I began having serious problems with the 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.
- December 2015–Had a housing inspection. Chuck was present. When I stated that there was still unfinished work in my kitchen, he had no memory of having been in here, discussing it with me, or taking pictures. Also no memory of the email I sent Melinda.
- January 2016—A carpenter visited my apartment and informed maintenance that the unit was not in compliance with ADA standards. It was rented to me as an ADA compliant, accessible unit. The toilet was serviced twice 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, Apartment Complex staff has decided to get a “special, disabled toilet,” and is 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 was informed by maintenance staff that management intends to have me move to apartment #110 (which I have visited twice already and both times determined that it did not meet my accessibility needs.)
There’s an aspect of my mental health that I haven’t written about here, because I wasn’t sure what to say or where my experiences fit. I was afraid of the reaction, and I didn’t want another thing to explain, educate people about, and argue with idiots over.
So I’m just not going to explain beyond what’s in this post. And if you can’t accept me or take me seriously after reading this, go away.
Over the last few days, I’ve had several conversations with male friends about the need for safe spaces. I’m combining elements from different ones to illustrate a point. The men I was talking to are all resonably progressive and college educated.