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When you think about accessible housing, what comes to mind first? For many people, it’s structural pieces like ramps in place of stairs, grab bars in the bathroom, lower counters and cupboards, and other kinds of physical designs. I’ll ask you to add all the structural and physical pieces together that you can think of and then add a few more things.
- Blinking lights to alert someone when the doorbell rings
- Management or office staff who can and will modify their communication, will remind tenants when rent is due if they struggle to remember, and will go over any and all paperwork with the tenants whenever they need assistance reading, remembering, or understanding the information
- Keeping common spaces straightforward to navigate, not moving stuff around without notice, and not blocking pathways
- Respectful support staff in institutional settings who don’t tease you, flirt with you, ask intrusive questions about your life or disability, or tell you that you just need too much help or talk too much
- Opportunities every single day to make your own choices about what you do and when you do it and to have those choices respected
- Places free from racist, classist, sexist, homophobic, transantagonist, and anti-immigrant cruelty (well, any cruelty)
I can go on, but this is enough to start to broaden the concept of what makes accessible housing. We can’t stop at what legislation says makes a space accessible. It’s not just about getting into a building or assuming what someone needs to get into a building. It’s about being welcomed and safe and being given access to what you need to know to maintain your housing.
Downloadable transcript for Pigeonhole Podcast #10.
Transcript
[bright ambient music]
CHORUS OF VOICES: Pigeonholed, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole.
CHERYL: As Portland continues to explode with development, gentrify, and upscale itself, all people who require affordable housing are being pushed to the margins or pushed to the streets. And regardless of affordability, accessible housing is extremely hard to find, including in some of the small villages, tiny homes, and pods being provided to get some people off the street and into their own built spaces. Steps up to homes, narrow doorways, tiny bathrooms, charming old buildings with no elevators, no wiring for blinking lights when the doorbell rings, no room to build out useable ramps in the front yard. But when you’re looking for affordable housing that’s accessible and near a range of public transit choices and affordable groceries?
Today we have stories from two Portlanders talking about housing from their specific points of view as people with disabilities. We’re looking at ideas around independent living, interdependence, respect, and dignity. Because these are some of the other pieces that make a home accessible, not just how the building is built.
[pensive music]
NICO: I’m interested in actually freeing the people, myself included.
I had a great situation going, and a few pieces moved. And now I need to find a new place. And trying to find a wheelchair accessible place in a booming city like Portland, calling around and trying to find something that’s actually affordable on a Social Security budget is almost impossible. And what ends up happening is people are forced into institutions. I have been greatly privileged to only have to spend a few weeks in an institution. But what I hear from my friends that are in institutions that it’s really, really difficult life.
My grandmother died in a nursing home, and I hate thinking about the time that she spent there. She had Alzheimer’s, and it really bothered me that this woman who spent so much of her life taking care of everyone else was just tossed aside into a nursing home. What I hear from people who’ve survived living in nursing homes is that it feels like prison. That you don’t get to choose when you go to the bathroom. You don’t get to choose when you come out of your bed. You don’t get to choose when you roll over. You don’t get to choose what you eat. You don’t get to choose when you leave. You don’t get to choose anything. You don’t get to choose when people are coming in or out of your room. Imagine that was your experience every day for the rest of your life.
My grandmother had stopped eating and drinking. I think it was like for 14 days, and she was just hanging on. And I’m glad she’s not trapped there anymore.
[music fades away]
I’m motivated by fear that I might end up someday in a nursing home or some other institutionalized setting. And at the same time, what motivates me to be here is love because I love the life that I have with the independence that I have.
I think that this idea that certain people deserve housing and certain people deserve health care and things like this, this is an idea that we have to let go of, right? Because it’s delaying our humanity. It’s holding us all back. And it’s no coincidence that that thought process often lines up with the color of people’s skin, whether or not they are straight people, whether or not they’re gender-conforming people. This idea that, you know, not everybody could live independently is not real. It’s not real.
[bright music]
Everybody deserves to have this freedom of choice, right? And this idea that that doesn’t exist for some people because they’re too disabled, it’s not allowing people dignity. And it’s not allowing people independence and freedom, right? Everybody deserves freedom. Isn’t that what we’re all doing here?
No one is actually truly independent, right? Some people’s needs are seen as you know, “normal,” and other people’s needs are seen as special. We all have needs. It’s the needs that are normalized that people accept as an everyday experience. Well, the reality is, is that we can live interdependently—which is what we do now—and we can rely on other people to help us get our needs met.
Housing is healthcare. And if we want to live better lives, we have to be housed.
[pensive music]
As a mixed-race, queer, and transgender person with disabilities, I believe we’re all spiritual beings having a human experience. And when people with disabilities have the freedom to choose our ideal living situations, we flourish. And when people with disabilities flourish, and when other vulnerable populations, when we flourish, so does the rest of humanity.
CHERYL: Just a note, here’s a story from a storyteller who wanted to have some privacy. In order to protect her privacy, I’m doing the voice. But all the words are hers.
[mellow music]
I used to live in an adult foster care home. It was also a place for hospice patients. There were not very many people—I think one person—who was close to my age, but most people were in their 90s. I was seeing people die on a regular basis. It was very hard for me to see people suffering and dying on a daily basis. But it taught me a lot about how we treat our elderly in hospice and adult foster care situations.
[music fades away]
They weren’t always getting the quality care that they deserved. I often felt like I had to protect them from the neglect and the mistreatment that they might be facing. And I had to provide. I had to provide something that maybe their families weren’t providing for them. And I had a lot of fear attached to living there sometimes. Sometimes I would just constantly think about like if my parents died or if people around me died. But people around me were always dying.
[pensive ambient music]
I feel like now I’m a little bit behind in like my experience and my development. I was worrying about things that 20 year-olds usually don’t worry about. I wasn’t worried about dating or making friends. I was more worried about you know, I just saw someone die last night. Or I was worried about if we had enough food in the house for them. Or I was worried about like that their family didn’t come visit them today. And also I was taking college classes at the time. So a lot of times I wouldn’t get any sleep the night before, so I wouldn’t do very good on my tests. Or I wasn’t very self-focused. Because I felt like I couldn’t be. People often would just kind of leave their parents at that place and not very many families would visit them. They were very isolated from the community, and a lot of people expressed to me before they passed away or would express that they were afraid of dying alone.
[music fades away]
We just need to maintain the person with a disability and their autonomy to make choices for themselves. But then also, I think community is also very important and to eradicate internalized ableism. I think that’s very important to address and to address the oppression of people with disabilities and the lack of access to services and things that uplift our community.
[atmospheric ambient music]
I’ve been living independently for two years now. I’m generally not experiencing seeing people die on a regular basis. Because of independent living and my new living situation, I’m very active in the community. I hold a job. I also go to school part-time. I also am very involved in the disability rights community. And I have lots of friends that can come over, or I can go see them. Independent living furthers the disability rights movement and gives people autonomy in their life choices and leads to better quality of life. For a while, I was just surviving at the adult foster care home. And now I can actually go out and have fun and live life to the fullest.
[music slowly fades away]
[bright ambient music]
CHERYL: Every episode is transcribed. Links, guest info, and transcripts are all at WhoAmIToStopIt.com, my disability arts blog. I’m Cheryl, and…
TWO VOICES: this is Pigeonhole.
CHERYL: Pigeonhole: Don’t sit where society puts you.
Music in this episode:
“Awake the Light” and “Motion” by Borrtex. (Source: freemusicarchive.org. Licensed under an Attribution-NonCommercial License.
“Romance” by David Szesztay. (Source: freemusicarchive.org. Licensed under a Attribution-NonCommercial 3.0 International License.)
“Everybody’s Got Problems That Aren’t Mine” and “Oxygen Garden” by Chris Zabriskie. (Source: freemusicarchive.org. Licensed under a Attribution License.)
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