Reflection: The Right to Live Independently
- elizabethrlipp
- Dec 5, 2022
- 4 min read
I am almost 5 months into my Watson year, and it has simultaneously flown by and crept along. There have been moments of self-doubt, homesickness, and an overwhelming sadness that I haven't seen those I love in so long. But I remind myself that this is an experience that I have always wished for and dreamt about. I have to take advantage of this incredible opportunity!
Not many people have the chance to travel and explore a topic they love. I love disability activism and am so thankful that I am able to build my knowledge. Gaining a more global perspective in invaluable. The Watson Foundation has given me so much more than a year of travel, though - my confidence, independence, and overall awareness of myself and my surroundings has changed so much.
I have found it difficult to articulate all that I am learning about disability activism and accessibility. How can I make my observations accessible to those who don't have a crip theory background? That's one reason why my blog posts have been semi-educational, so that those of you who read my posts know general ideas that I build off of.
What I've decided is that I am just going to talk without fear of confusion. Please know that you can ALWAYS message me with questions (even as simple as "What does _ mean?"). My social media is linked and you can send me a message through the "Contact Me" page. I would love to be in conversation with all of you!
So let's get into it.
Globally, disabled bodyminds have historically and are presently cast aside and invalidated. We are not viewed as equal, and many non-disabled people with power do not respect or value disabled people. I have seen it every single day of traveling: non-disabled people speaking directly to an interpreter instead of the person who is hard of hearing. Pushing a wheelchair without asking the wheelchair user if they would like assistance. Slamming the button to open the door, which can jam the mechanism and cause the button to break, making the space inaccessible. I could go on and on.
Many disabled people are seen as burdens to broader society. First, that is not true. Second, society is literally not built for disabled bodies. How can you feel welcome in a place that you physically or mentally can't enter? Disabled people are seen as burdens because society has assumed they are dependent. But when given an adequate amount of support, inclusive design, and flexible accommodation, disabled people are incredibly independent and resilient. And many can communicate when they would benefit from assistance.
A picture from the 2022 Freedom Drive in Brussels, Belgium. I was lucky to attend and see so many disabled voices being amplified. *You can barely see me on the right hand side of the picture, behind an individual in a maroon coat*
Image Description: A large body of people of various ages and backgrounds are faced towards a camera, holding signs that read "RIP 27.09.2022" and "Personal Assistance Now". Many have rain gear on, jackets and ponchos. Several wheelchair users are visible as well.
For those who require assistance to live independently, oftentimes there are financial barriers to that assistance or a social stigma against openly needing assistance. There are those who say that if someone needs assistance in their home in order to live independently, they should instead be placed in an institution, isolated and hidden from society. I will say this until I die: Institutions are not solutions. I am a huge fan of the crip community, but institutions are breeding grounds for isolation, abuse, and "out of sight, out of mind" mentality. Crip community building should be open to those who would benefit from that space, not forced onto anyone whilst being constrained to one facility.
I saw the effect of deinstitutionalization and re-institutionalization in Sweden. For years, disabled people were forced into institutions , locked away and kept from being active members of society. Someone once asked me that in institutions, aren't there types of support and care that aren't available outside of that environment? My response: make those types of support and care accessible worldwide. Disabled people deserve the right to DECIDE how they want to live, where they live, etc. If the only place they can get adequate support is in an institution, the system is not robust enough.
I was listening to this conversation from about 5 feet away. I also had the chance to talk to the Commissioner a day later:
Image Description: Ellie is standing next to the European Commissioner for Equality. Ellie is a young white woman with gold glasses and blonde hair, pulled back. She is wearing a gray dress and smiling widely. The Commissioner is standing on the left, a white woman with dark brown hair cascading down her shoulders. She is wearing a black dress, a white beaded necklace, and a red and grey shawl. She is smiling.
Now, there is a push for smaller institutions with only six disabled people or less in each facility. But the issues are still there: non-disabled lawmakers are forcing disabled people into a way of living that may not be ideal for them. Make the support accessible in the individual environments of the disabled people. I know it's an expensive ask, but it boils down to simple human rights. The global population has some choice as to how they live; that choice is too often taken away from disabled people.
My favorite saying from the movement is "PISS ON PITY." We, as disabled people, demand the right to have choices in how we live. We are NOT objects of pity or sources of inspiration. See us and treat us as equals by giving us the support and accessibility that will allow us to live independently.
Image Description: A white woman with curly brown, shoulder length hair is looking down at her shirt. It is a black t-shirt that says "Piss on Pity" in large block white letters. She is smiling.
Are you interested in learning more about the Independent Living Movement? Here are some things to check out:
- "Disability Visibility Podcast," hosted by Alice Wong
- Independent Living Institute in Stockholm, Sweden (thank you for hosting me for three months!): https://www.independentliving.org/indexen.html
- European Network of Independent Living: https://enil.eu/campaigns/freedom-drive/
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