The image above is the disability pride flag. Learn more about it’s meaning and history here.
In honor of Disability Pride Month, I am sharing this excerpt from my forthcoming book, Rebel Healing: Transforming Ourselves and the Systems That Make Us Sick.
To go a step deeper in our exploration of how to talk about health challenges, I want to specifically explore why spoonies should consider identifying as disabled. I’ll talk about why people with chronic illness can benefit tremendously from being in community with disabled folks and how, together, we can build more power and access.
Based on how few people even in my liberal Boston bubble knew the definition of the word “ableism” when I started writing this book in 2017, my assumption is that many people across America are not yet familiar with the term, which describes discrimination in favor of able-bodied people. Unless you are disabled or know an openly or visibly disabled person, it’s unlikely that access challenges and the exclusion or inclusion of disabled people are something you think about every day. If that’s you, don’t despair. All is well. Take a deep breath and keep reading. I still have a lot to learn about disability justice myself and am by no means an expert. I am grateful to my community for their support in furthering my education, and I continue to learn a lot from the work of disability (justice) activists, educators, and cultural workers like Mia Mingus, Kevin Gotkin, Riley Dwight, Alice Wong, Naomi Ortiz, Leah Lakshmi Piepzna-Samarasinha, and Sins Invalid, a disability justice performance project that centers people of color, queers, nonbinary and trans people with disabilities and maintains a very useful disability justice primer. I share additional resources at the end of this chapter.
It may seem like being focused on healing and calling yourself “disabled” are at odds, but I want to argue the contrary. People with chronic illness and otherwise disabled individuals have a lot to gain from being in community with each other. I first started to understand this by lurking in the Bay Area Sick & Disabled Queers Facebook group. I have never lived in the Bay Area, but someone once suggested I post in there about my coaching and I observed so much beautiful sharing and support and community validation in the group. Even though I’d been sick for more than a decade at this point, this was the first time I’d seen a community use both the “sick” and “disabled” identifiers together (disabled brilliance at work!). It just makes sense for these overlapping communities to be able to share information, connect with others who “get it,” and voice and troubleshoot all kinds of accessibility concerns––from crowdsourcing practitioner recommendations to ideas for a good date restaurant that could accommodate both gluten-free diets and wheelchair users.
In my years of being in community with sick folks, I have found that many with chronic illness don’t choose to identify as disabled, or don’t know that it is even an option. Unfortunately, ableism is rampant in many chronic illness support groups where being sick and disabled is generally considered bad, undesirable, and something that needs to be fixed. But when folks with chronic illness join disabled communities and learn about disability justice, we can experience a whole new sense of belonging and empowerment. What a lot of spoonies don’t realize is that chronic illness is considered a disability under the Americans with Disabilities Act (ADA), meaning that both employers and businesses are legally obligated to provide you with “reasonable accommodations.” Unfortunately, that doesn’t mean they will, but as more of us claim the disabled identity, own it and demand equity, we grow our collective power to change the status quo for ourselves and others. Choosing to identify as disabled and work in community with other disabled folks provides a way for our overlapping communities to come together and ask for what we need with a bigger, broader voice. And the accommodations required by sick and disabled people to participate fully in society are not so different from broader societal needs. Our communities just need them more often and more urgently. By lifting up the needs of sick and disabled individuals, we are providing more options and accessibility for everyone.
Years ago when I couldn’t stand up for long periods of time, I asked a local music venue if they could reserve a seat for me for a particular show. I love live music, but I mostly stopped going to shows when my legs started feeling weak all the time. That one venue was happy to reserve a chair for me and did so many other times. Other venues didn’t make it as easy, but I’m sure if I had gotten a group of people together to push them on it, we could have effectively pushed all venues in the area to do the same. This would benefit people with short-term injuries, seniors, and all kinds of people who don’t usually identify as disabled. Given that more than half of Americans have a chronic health condition, we can assume that most people have needs that they might not even know could be accommodated in many public spaces. If they could acknowledge and receive these accommodations, they might be able to do more and move through the world with much greater ease.
I personally began identifying as disabled fairly recently on the suggestion of a student activist at Harvard Kennedy School, where I used to work. I considered myself intermittently disabled because at the time I was generally feeling well outside of occasional flare-ups. I understand now that claiming the disabled identity wholeheartedly is more useful in the context of collective action. Even if I am not in fact disabled every day, it doesn’t mean I am not disabled. There have been a lot of times in my healing journey when I have been very clearly and consistently disabled. I was speaking to my family about getting a wheelchair at one point because I couldn’t stand, and I was sick of not being able to go anywhere that required standing. Still, for years, it didn’t occur to me to identify as disabled. But through connecting with more disabled individuals, I realized both that I am disabled and that disabled folks are my people.
I’ve felt so validated by my disabled buddies and have learned so much from them about how to advocate for personal and collective wellbeing in many contexts. Disabled folks who have been disabled for a while, sometimes their whole lives, are often experts in surviving within systems that are not designed for them, from the workplace to the doctor’s office. A lot of stuff that I struggled with early on—feeling like a burden, navigating insurance and health care bureaucracy, not knowing how to get support in the workplace—most of my disabled buddies learned how to navigate with grace years before me. Issues that people just complained about in chronic illness support groups, my disabled buddies had found solutions to. They are also experts on what support is available through the state and other institutions. When able-bodied individuals get injured and/or become ill, they are usually confronted for the first time with the discomfort, bureaucracy, and injustice that disabled Americans navigate on a daily basis.
Disabled folks have also opened my eyes to just how rampant ableism is, and how deeply we have all internalized it. Getting support to see where ableism lives in you is a crucial component of healing. The more disabled buddies you have, the more you can support each other to see that some of your struggles are really rooted in internalized ableism, therefore freeing you up to live your life more fully on your terms.
Identifying as disabled may not be a fit for everyone but I encourage you to explore it if you have not already. Sick and disabled folks still experience a lot of discrimination, so coming out publicly as disabled is worth thoughtful consideration. Even employers and businesses who want to do the right thing aren’t hip to what it really means to be inclusive and accessible. Choosing who to tell and when, especially in hiring processes, may be different in different industries and contexts, so I recommend doing your research. Identifying as disabled on a job application will get you on the top of the pile with the federal government for example, but it might mean you don’t get an interview with a local business. In some contexts, you may be required to get disability benefits and/or recognition from your state of residence in order to take advantage of certain resources. Outside of navigating the government and work realms, you might find that identifying as disabled socially, or even just privately, has its own benefits. Choosing to be in relationship with disabled folks can sweeten and broaden your community, help you feel seen, give you a new framework for political activism, and support in learning your rights as someone with a body that doesn’t move through this ableist capitalist reality with the same ease as other bodies.
The more we build disabled community and come together to make our communities more accessible now, the more rapidly we can arrive in a future where the focus of our attention is on matters beyond access and inclusion. I want to invite you to imagine that for a moment. If you and your sick and disabled kin didn’t have to spend so many spoons thinking about how to get places or wondering if your needs would be accommodated in those places, for example, what might be possible? What might you do with those extra spoons? What other social challenges could we heal and transform together if we already had what we needed?
Here are some disability resources that might be supportive:
Sins Invalid’s disability justice primer Skin, Tooth, and Bone: The Basis of Movement is Our People, is a great intro to disability justice and how to apply it in organizations, planning events, and other social movement work.
Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarsinha is a beautiful entrance into the history of disability justice, creating care webs, centering healing justice in our movements, and uplifting sick and disabled, queer, trans BIPOC brilliance.
How to Get On howtogeton.wordpress.com/ Provides guides on applying for Social Security and Medicaid, finding affordable housing, how to get a wheelchair, how to get a home care aid, and so much more. It’s also bright and cheery and has a very loving vibe. It might be particularly helpful for folks with ME and other homebound and bed bound individuals.
Job Accommodation Network (JAN) https://askjan.org/ is a phenomenal resource for all things related to disability and work, for individuals and employers. Among other things, it has a 1-800 number you can call for free consults, and links to several job databases specifically for folks with disabilities.
Chronically Capable https://www.wearecapable.org/ is a platform that connects chronically ill folks with remote work opportunities with supportive employers. It’s less robust than JAN, but growing all the time.
Disability Visibility Project https://disabilityvisibilityproject.com/ is a project of disability justice advocate Alice Wong that encompasses a blog, podcast, an advice column, and much more.
Life In My Days https://www.lifeinmydays.com/ is a peer- & youth-led international non-profit supporting communities and individuals on their journeys for self-actualization. I attended an awesome training on disability justice led by this group and they have a lot of solid content on their website about living with disabilities.
CripNews https://cripnews.substack.com/ is a wonderful weekly newsletter about disability art and politics put together by Kevin Gotkin.
Reflection Questions:
What did you notice reading this section? What feelings arose for you?
If you do not already, how does it feel to consider identifying as disabled? Do you feel fear? Freedom? A mix of emotions?
Do you see a small sweet next step you want to take to learn about disability benefits, disability community, or disability justice?