By Anomie Fatale
Home is where the heart is. It’s also where home care is managed and all essential activities of daily living occur for most people with disabilities. Things needed for a stable home environment are accessibility, stability, and function. Any living environment must be set up so that a disabled person has access to enter and exit at all times, and they will be kept as safe as possible. There must be security that the home is a place they can afford and will not be evicted from unfairly, and that will be there for them. The home setup must be functional so that their lives and care can run effectively and without any extra stress. All of these housing essentials are needed, but are extremely difficult to obtain. Limitations include faulty support nets, incompetent attendant care workers and companies, lack of attendant care or insurance, and the biggest limitation, being forcibly low-income on SSI or SSDI. I had to go on SSI from symptoms of Chiari Malformation that came on at age 20, and became a wheelchair user four years later after tethered spinal cord surgery and a fall down a flight of steps. The result is quadriparesis: weakness of all four limbs. These are the housing situations I’ve been in since.
After being discharged from the rehab center for my injury, I was essentially homeless because the steps were no longer an option. There were no wheelchair accessible locations to go to; my social worker couldn’t give me any options. I navigated through the system, contacted my local CIL, and was given information about the availability of an accessible apartment through the housing authority. I had been on a waiting list for years, but at last I got the call. I went to the building to sign the lease, but both elevators were down so I was unable to view the apartment. I asked if I could wait to view it before signing, they said it would be taken by someone that day and then I would be put back on the waitlist for up to eight years before anything was available again. Knowing there would be many issues with the place, I took it anyway. It was my only option.
The building was on fire almost once a month and I lived on the sixth floor. I was told by housing staff “do not open your door in a fire or try to exit because someone could use that as a chance to break in.” Residents were told during fires to put towels under their doors to keep the smoke from coming in. I can’t reach the floor, so I would wait out on the balcony cage porch that had no entryway for fire rescuers. There were so many fights and shootings. The elevators would break down all the time, so I’d be stuck inside or outside. I’d sleep in the lobby in my chair, surrounded by conflicts. My attendant care services were difficult to manage there; most company workers were too uncomfortable with the environment. My friend and I had a game called “blood, pee, or vomit” to guess what would be on the floor of the elevator as the doors opened. Around the corner a van pulled up and the door opened and there were men inside with guns. One pointed his at us and laughed, but then shut the door and they drove away. The next day a shooting happened on that street that lead to the deaths of a few people. It haunts me with deep sadness for the kind souls caught in that chaos. I did everything I could to move somewhere safer. In spite of all of this, the people in my building were very respectful to me; they’d hold the door open every time I needed to enter because there were no access buttons for me to use.
I found that almost all disability-only affordable housing is for senior residents. Other than a few privately-owned places that are always full, barely any affordable housing for young adults with disabilities exists. If you’re younger and need to be on SSI and don’t have the financial assistance from family or friends, the best you can do for yourself is public, non-disability specific housing with some accessible units.
After three years of constantly asking the housing authority to be moved to a better location with no success, I started dating a guy who had a first-floor apartment in a middle-class part of the city. He built a ramp so I could live there with him. We broke up two months later. So that I wouldn’t become homeless again, he did the compassionate thing and moved away, allowing me to stay in the accessible apartment. I had a safe, accessible place, but I could not afford it on my own. It was a two-bedroom unit, so my plan was to find a roommate that could help afford it. I found one online and we got along fine. My attendants, however, did not get along with her. There was conflict between them regarding cleaning issues, and I got sucked into the drama. Having dealt with the issues of living in the projects, it seemed like it was not a big deal, so I ignored it for a long time. This however, led to my attendants resenting me. It was a dumb war. I had grown really sick of it and of the area in general. So many people were ignorant and disrespectful. Cars would park on every curb cut, so anytime I went out, I had to drive my powerchair in the street with traffic. I wanted a better place to live, so I chose to take the risk this summer to find it.
The original “escape” plan was to find a three-bedroom place with my friend who had always helped me out during attendant care issues and my boyfriend that I had begun seeing the previous winter. I knew it was really soon into the relationship to be moving in with a boyfriend again, but we figured that three incomes would give us more options, and he also wanted to get out of where he was living in the city. I gave my notice of 60 days to move out, thinking we would have a place in time by then. We had applied for an accessible place that was perfect, in a nearby suburban town on a bus line. We had to wait weeks just to find out that it went to able-bodied applicants that did not need a co-signer like I did, because SSDI isn’t enough to apply without one.
Many rental properties do not even take co-signers. I’m privileged to even have a family member that could be my co-signer. So, for everyone else on SSDI, most landlords will not rent to them at all. Being on disability just means you’re too poor to afford housing rentals that aren’t project based, which are unavailable anyway.
With time running out, my mom suggested to us the idea of home ownership. With support from my family, I thought that with the combined help, I may have enough for a down payment. We looked at some houses, and it seemed to be a great idea, just had the major issue of: YOU CAN’T RUSH BUYING A HOUSE. Being disabled, most of your energy and money goes to upkeep on your body. Homeownership is a lot of stress and responsibility.
Time was up, and I moved out of the city this June with no solid place to go. My mother said I could stay with her, but living with family is not always an option. My family are all wonderful, loving people, but that does not mean they are stable to live with to manage my disability.
My mother’s landlord would not allow my cat, and my bed could not fit in her downstairs office. Additionally, my mother has Ehlers Danlos Syndrome and lives with my sister, who also has EDS and cerebral palsy. My sister’s two young children, who also have behavioral and physical conditions, live there as well. My insurance company offered to pay for accommodations in her house so that I could live there, but I said no thanks because (a) I doubted their landlord would allow the modifications to his property, (b) even if he did, it’s a very stressful environment for me with the childcare (constant screaming), and (c) being stranded without my necessary modes of transportation is harder on me than being homeless around bus lines and trains in my powerchair.
I went to my father’s to stay for a bit. My parents separated when my father decided with his Parkinson’s that he needed a stress-free environment to manage his medical issues. He purchased a historical house on a mountain by a river in the middle of nowhere, saying it was a “beautiful place to die.” I make it a point to remind him people can live a long time with Parkinson’s with the right care and assistance. He’s happy there, but it is the most inaccessible place ever. To enter the front door, my friend had to push me up a long cobblestone pathed hill in a transport chair. The only shower is up hardwood stairs with an overhang; there’s no central air, and with dust and mold that sets off my mast cell inflammatory/breathing issues. In spite of all of this, I chose to stay there with him this summer in between housing because I could be with my cat, my bedroom was on the first floor, and I really feel like my dad should have someone there with him. My powerchair went to a friend’s place to look after it for me while I had no place for it. I officially gave up my freedom.
It was a lot keeping it together and emotionally; I was just holding on by a thread. That thread snapped the day I discovered my cat was sick. My dad panicked and couldn’t really help me. Living at his house, I could not have attendants, and because of the location I was out of the range for any company to send anyone to help. For emergencies, I had my friend and boyfriend on call. My friend came up from his parents’ in Maryland to get my cat and take him to the vet, and my boyfriend came to take me to his apartment in the city where at least I could use his shower, but I’d be stuck in his inaccessible apartment alone all day while he went to work.
It was a long car ride to his apartment, and I was processing a lot in my mind. I was trying to see the light at the end of the tunnel, but just couldn’t. Everything felt like a dead end. I blamed myself for being foolish enough to give up my accessible housing (the safest independent space I’d ever had) just because of silly drama and an ignorant community. We went through the drive-through at Wendy’s, and I ordered a baked potato. I tried to eat it, but I felt emotionally sick inside, like I was going crazy. I was too frustrated, and I started crying…a lot. My boyfriend got upset that I was upset. He couldn’t understand where my mind was and why I was so frustrated. Abled bodied people that have never dealt with being trapped dependently in other peoples’ lives usually don’t understand. He told me I was being selfish and ungrateful to him that he drove the two hours out to come get me. He then wanted me to admit I was being selfish and over-reacting. So, I over-reacted, and stabbed myself repeatedly with the fork I was eating the potato with, and had him drop me off at an emergency room. They transferred me to an inpatient medical unit for mental health issues. It had a roll-in access shower, air-conditioning, an electric hospital bed that I could easily use, and surprisingly decent food. The moment I got in there, I no longer felt crazy or suicidal. It was safe, and my basic needs were being met with no emotional conflicts from needing them met. I just wanted a shower, actual meals, and clean air without anyone arguing with me or telling me I shouldn’t be upset for wanting those. I’m privileged to have insurance so that hospitalization was a possibility; otherwise, I do think I would have gone off the deep end. My therapist, who I’ve seen for years to handle the mental health effects that physical disability causes me, noted that in the UK the main treatment for Schizophrenia is stable housing.
The social workers in the hospital gave me the address for an accessible homeless shelter. With all of my privilege: a spoiled white U.S.A.-born citizen on SSDI income, with a qualified co-signer, insurance to pay for any home modifications, and yet my ONLY independent living option is a homeless shelter just because I can’t walk up steps.
My friend still wanted to get an apartment together, so we kept looking. Finally, one that I called had an accessible “back entrance” through a sliding glass door, but they did not accept co-signers. I had had it at that point and said to the woman on the phone, “Of course I need a co-signer. I’m on disability. I have medical issues that keep me from working full-time. This is discrimination and is just not fair.” I guess she listened because she called and had talked to the property management, who were willing to make an exception for me. Thank God and humanity. I moved in August and have never been happier at a place. I have new attendant care, a stable and safe environment, and we’re working on modifications for the door so I can use an electronic device to open it. I’m excited for life and the future. My condition is progressive; we have no idea where my health is going to go and when. But I have a great foundation to build on, and I’m looking into going back to school and part-time work. I’m still going to do music as well. I’ve been practicing with home recording equipment and plan to launch a solo project next year called “Anomie Autonomie” (Autonomy is my life’s mission, but that spelling just didn’t look quite as catchy.) I am single now. It was very difficult, but my need for understanding is greater than my desire for a partner. I would love to share my life with someone, and not be dependent on theirs. You do you, it’s a powerful thing, but it’s impossible to do without a space that’s truly yours.
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