I have decided to offer brief disclaimers and updates at the start of my posts. For today, I want to acknowledge that writing these pieces has not been as high a priority as I expected it would when I wrote my last “come back” piece. During the week, I have been focused on transitioning to my new post-doc position and at the end of the day, I often need a break from screen time to rest my eyes and recharge. On the weekends, I have prioritized PNW adventures with my partner and pups. And while I could carve out more blogging time, I am also trying to unlearn patterns of productivity. Plus I believe that choosing to surrender and ease up on pressuring myself into what does not serve me is a form of disability justice, which is my ultimate aim in writing this blog anyway. I am listening to my body and what it needs, so these posts will come out as they do when they do. Read on for a post that I’m really excited to share that articulates my passion for disability-affirmative mental healthcare and why I think this approach benefits everyone. Note though that I could - and maybe one day will try to - write an entire book on this topic, so this is an abridged version that will likely have offshoots that are expanded on in future posts. As always, your thoughts and feedback are welcome.
Inspired by my personal experience, advocacy, and professional training, I have been developing my interest and expertise in providing disability-affirmative mental healthcare. My post-doctoral fellowship in rehabilitation medicine focuses on mental health treatment to improve the lives of people with disabilities. This past year, I had the privilege to present to a couple of groups at the University of Washington on the topic and am slotted to share more at upcoming talks at UC Berkeley and Rice. But what does it mean to be disability-affirmative? How does this appear in mental health care and our relationships more broadly? And why do I believe we should all care?
Let’s start by talking about what it means to be disability-affirmative. Any identity-affirming practice involves explicitly and humbly discussing that identity, in this case, disability, and the impact that identity has on a person’s life. The World Health Organization describes that disability results from the interaction between individuals with a health condition, such as cerebral palsy, Down syndrome, and depression, with personal and environmental factors including negative attitudes, inaccessible transportation, and public buildings, and limited social support. Described a bit more succinctly by the Center for Disease Control, “a disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).” Therefore, interactions affirming disabled identities involve nonjudgmentally discussing activity and participation barriers. Disability affirmation also involves the identification of the gifts or strengths that come with disabilities. Rather than seeing disabilities as deficits, disability-affirmative approaches see disabilities as differences that come with unique strengths, capacities, and ways of interacting with the world.
Let’s unpack these disability definitions a bit more to get a sense of what it means to affirm a disabled identity. Disability is the one identity that people can acquire at any point in their lives. This truth led disability activists to coin the term “temporarily able-bodied” to describe those who are experiencing a period without disability. This phrasing acknowledges that if we live long enough, most of us will be disabled at some point in our lives, and whether it comes sooner or later depends on our circumstances. That being said, unique experiences associated with being congenitally, severely, and/or chronically disabled differ from brief periods of illness or injury. And many with disabilities are not experiencing illness or injury. I reflect back on a few times that others have said to me that they “understand” my experience of blindness because they have had brief periods of being unable to use a limb due toot injury. Well-intentioned, these comments highlight the difference between temporarily experiencing disability and identifying as disabled. While a broken limb may increase awareness around inaccessibility and require temporary use of assistive technology and tools, those with a brief period of disability will often not experience the stigma and isolation associated with being disabled in an able-bodied designed world. Disability remains an aspect of diversity due to the unique identity experiences of the disabled community, all the while the benefits of access and inclusion for people with disabilities also span those with temporary illness or injuries, using strollers or carts, and so much more. So when I advocate for disability-affirmative practices, I refer to practices that support people with disabilities by reducing structural barriers like inaccessible spaces, tools, materials, and more, as well as reducing the attitudinal barriers faced by people with disabilities due to ableism.
With those definitions in mind, I will spare you the hour-long PowerPoint slide deck and cut to the key broad practices I believe undergird disability-affirmative mental health care regardless of treatment approach or modality, though I think these are also good practices for any and all relationships. Since this is the cliff notes version, please come to my talks or reach out for resources - such as this piece on three things clinicians should know [link] - to learn more. These practices align with good clinical care tenants, including cultural humility and competence, respectful and dignified person-centered care, and strengths-based practice.
We cannot tell from someone’s outward appearance what their identities are, including their disabilities or needs. Disability-affirmative providers do not make assumptions about needs and ask explicitly how to best meet individual needs. Humility and collaborative problem-solving can go a long way in identifying where and how someone could use accommodation and support. Whenever feasible, do what it takes to flexibly accommodate care to meet the needs of the person being served. And check in to identify whether the accommodations are sufficient and helpful or if there are other steps that could be taken to best serve the needs of whoever you are working with. It can be infantilizing and infuriating for others to assume someone’s needs - for example, I hate when people grab my arm to physically guide me when I am using a white cane without asking first. Would you like to be grabbed by someone unexpectedly? Disability-affirmative care respects the autonomy of the individual, upholds the dignity of all people regardless of disability type or status, and provides space to empower the individual to assert their needs. Disability-affirmative providers also acknowledge the longstanding role of the medical system in oppressing people with disabilities - *cough* eugenics *cough* - and address the ways in which ableism in medicine may make it difficult for a person to share their experiences or needs in this environment.
Especially important in the realm of mental health treatment, disability-affirmative practices include a discussion of how to harness strengths to improve well-being. As an example, I worked with a neurodivergent patient last year who originally only saw their disability in a negative light. They identified the way their disability slowed them down, impaired their ability to connect with others, and contributed to their anxiety and depression. Early in treatment, I asked whether they would be interested in learning about the data indicating strengths associated with being neurodivergent. After seeing examples, they were able to identify their own “neurodivergent superpowers” - strengths and talents - that helped them accept this aspect of their identity and develop pride and confidence in this identity. All the while we held space for the ways their neurodivergent experiences have been extremely painful, explicitly labeling the oppression imposed by ableism.
On the surface, many struggles to identify strengths associated with disabilities like chronic pain or persistent mental health challenges; providers may also hesitate to “glorify” these challenges when the goal of treatment is to reduce the impairment caused by symptoms and improve quality of life. To me, these challenges to a strengths-based approach are another manifestation of ableism. I believe that regardless of the form of disability - including mental health-related disabilities - it is healing to forge meaning and self-worth and identify disability-related strengths - emotional sensitivity, flexibility, resilience, creativity, compassion, or conscientiousness to name a few - because identifying strengths enhances mental health and helps change the relationship to one’s disabled identity. Identification of strengths does not deny the suffering caused by disability - these functional limitations, structural barriers, and pervasive ableism are often devastating. This strengths-based approach nonetheless offers balance and a middle path that acknowledges and accepts the pain while striving for change. Plus, ample research now suggests that a stronger disability identity relates to improved mental health outcomes (as an example, here is work I published with the illustrious Dr. Mercedes Zapata).
At the risk of redundancy, I want to reiterate why I believe these disability-affirmative mental healthcare practices offer a framework that can improve health care for everyone. We all have bodies and minds. All of our bodies and minds are diverse and changing. We are always adapting to our changing needs, whether it’s sickness or injury or a congenital or acquired disability. The pursuit of medical treatment inherently indicates that there is a medical need, which often presents as an illness or injury that may or may not lead to disability. We all deserve high-quality, respectful healthcare. So, when I advocate for specific disability affirmative mental healthcare practices, I am advocating for practices to improve healthcare practices for all.
Related things I’ve been enjoying:
- I recently discovered the Docs with Disabilities podcast with Drs. Lisa Meeks and Peter Poullos, as well as diverse guests, and I have been rapidly consuming all the episodes!!! Highly recommend it to any healthcare providers (not just medical doctors) who want to learn more about the experience of disabled providers [Apple podcast link]
- This NYTimes Adapt-Ability video, “I’m going blind. This is what I want you to see” [Link]. I found this personally relatable and (pardon the pun) eye-opening
- Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha is a compilation of essays that sheds light on disability politics, psychology, intersectionality, social justice, advocacy, and more. There is so much to learn from this one!
- Since I wrote about neurodiverse experiences here I think it’s worth featuring this compelling memoir I recently read entitled, The Electricity of Every Living Thing: One Woman's Walk with Asperger's
- A new hysterical mental health memoir by the wonderfully talented Jenny Lawson entitled, Broken [Link]. I have only just started this one but all of what I have read by her has been fantastic!
- This piece about "Hacking an Ableist World" by Laura Mauldin highlights how disabled people creatively find ways to live life that goes mostly unseen [Link]
