Can an “outsider” be an advocate for disability rights?
In the fall of 2017, I kicked off year 2 of my 3-year Master of Social Work (MSW) Program at UIC as an intern at Access Living. Access Living is a disability advocacy organization in Chicago that serves the disability community through information, referral, & outreach, independent living education & support, mentoring & peer counseling, youth programing, policy advocacy, and community organizing & activism. Like, whoa. That’s a lot. They do everything. All the things. “Welcome to the University of Access Living!” they said.
After being accepted into the LEND program as a trainee, I intentionally chose this organization as my field placement because I wanted to completely immerse myself in the world of disability. Although I worked as a personal assistant for a student in undergrad and I have family members with disabilities, I saw myself as an outsider. I was still incredibly unfamiliar with what this community was all about.
Language and etiquette. Intersectionality. Access and accommodations. Segregation and institutionalization. Systematic oppression. Disability identity, culture, and pride. As you can imagine, my worldview was shaken up a bit, and this was just “syllabus week” at U of AL. Overwhelmed and overjoyed, I moved forward in a journey towards becoming an ally and advocate for a community that has been (and will be) an essential part of my world.
Asking the right questions
Have you ever had someone make a choice for you, assuming that you would be pleased with what they chose, but instead you were dissatisfied or perhaps angry that they didn’t ask you what you actually wanted? The central, most important piece that I have learned from my experience at Access Living is that the power of choice is violated much too often for people with disabilities, and it is a constant struggle to get people to understand why it matters.
So, why does it matter? Why does it matter that people with disabilities not only get the opportunity to make choices for themselves, but can be called on as leaders to play a central role in creating solutions for their wider community? What does it mean to center the voices of people with disabilities in conversations involving accessibility, affordable housing, education, and medical care? How can we hold ourselves, our friends, and institutions accountable in fully celebrating the beauty of disability without discounting the struggle and pain often brought about by an inaccessible and ableist society?
YIELD the Power
I have been able to work in different capacities for several programs within Access Living, all of which have taught me different angles with which to approach disability justice. One program in particular helped me hone leadership skills as an educator and facilitator. The Youth Information, Education, and Leadership for Developmental Disabilities (Y.I.E.L.D.) program gave me the opportunity to work with students with autism and other disabilities. When it was decided that I would co-lead this group, I thought, “How am I, as an outsider, without a disability, supposed to facilitate curriculum around self-advocacy, leadership, and disability identity? Why would they listen to me?”
It didn’t take me long to realize that it wasn’t about whether or not the students would listen to me, or even learn from me. My job as a facilitator was to ask the right questions. My job was to bring to the surface the ideas of the students – and through that process encourage student learning and increased understanding of their own rights and opportunities as people with disabilities.
Because young people with disabilities can grow up in an environment where many things are chosen for them without their input, many can internalize the idea that they don’t have agency. They may struggle finding role models that they can identify with. And think of how hard it must be to develop self-confidence when people around you just want to fix you. Young people with disabilities are fully capable of making choices for themselves. People without disabilities might have to take a step back and allow space for decision making, and help facilitate appropriate, individualized opportunities for communication and expression. It’s like, the seed is already there beneath the surface, it just needs a supportive environment to sprout!
Where do we all fit in the fight for disability rights?
The ‘world of disability’ is not an enclosed arena that I get to stand outside of while people with disabilities struggle under systems of oppression. This world has more of a permeable border. I, or anyone close to me, can acquire a disability at any point in life. I encounter and experience life with people with disabilities every day. The words I say, the words I don’t say, the assumptions I make, the establishments I support, and the stories I share are all interconnected within and outside this disability world. I am still an outsider in the sense that I have to work towards lifting the voices of those in the center – people with disabilities, honoring their choices, and sharing their stories as an ally, but we don’t live in separate worlds.
Whether you’re working towards being a better ally; a professional working with people with disabilities; a parent, sibling, or family member working to best support your loved one; or a person with a disability yourself, we all play a role and have a piece in this fight for justice and equality. We all have ideas, stories, solutions, or passions that can truly benefit the disability community, it just might take some work, asking the right questions, to bring your piece to the surface.