In part one of this series, I concluded by inviting readers to sit with this question: Why is the impetus for acceptance so often placed entirely on the shoulders of those experiencing physical limitations, mental impairments, and chronic pain, instead of on the people around us whose genuine acceptance and understanding has the potential to deconstruct the social and societal barriers that often cause us more grief than anything happening inside our bodies? I too, have reflected on this question over the past few weeks and have landed on a few ideas/thoughts/opinions I’d like to explore.
I’d like to start by diving a bit deeper into the social model of disability. The social model of disability was developed by disabled activists in the 1970s and 1980s. The model defines “disability” as a socially defined condition dictated by cultural attitudes and prejudices instead of by medical impairments. The model defines “impairments” as unique problems such as chronic pain, mobility impairments, etc., that may prevent an individual from doing certain things. However, the model maintains that it is the cultural attitudes about disability and not the impairments themselves that “disable” people. This is not to say “the only disability is a bad attitude” or to downplay people’s pain and limitations, but to establish that it is not people’s bodily or mental differences that restrict their access to full participation in society, rather that access is restricted by a society that designates people with impairments as less-than, or too different to be included. Therefor, societal progress under the social model of disability does not rely on medical “solutions” for disability, but on shifting cultural beliefs so that individual impairments do not prevent full social and institutional inclusion. The social model of disability does not discourage individuals from seeking treatment and relief from their symptoms, but focuses on the concept that full inclusion in society should not depend on an individual’s ability to attain or perform health or abled-ness. (mentalhealth.org.uk)
The social model of disability resonates with my personal experience because the majority of my emotional pain related to my disability is not due to my physical pain or my chronic fatigue (although I am not a fan of these either), but due to the perceived barriers to my full participation in society and community, and the ableist cultural narratives that cause deep insecurity and anxiety. I am constantly fighting these narratives within myself, constantly questioning and defending my worth to myself, constantly worrying that others will confirm my insecurities because the beliefs that cause them are so ingrained in the dominant narratives of US culture. Right now learning to discard these narratives and free myself from the insecurities they cause is crucial survival work for me, and one of the few factors in all of this that I can take some control over. I know that in order to make my life livable, I can’t wait for the culture I live in to accept me (with my impairments) as an equal participant in society. However, I long for a future in which we are all free from the separation and pain caused by ableism and cultural narratives that deny innate human worth and inclusion.
According to the CDC approximately 61 million adults in the US currently have a disability. That is 26% of the adult population. People with disabilities are not a fringe population or special interest group, we are ¼ of the adult population. However, people with disabilities report higher rates of loneliness and isolation that non-disabled adults. In 2017, UK-based disability non-profit, Sense, reported that 53% of disabled people report loneliness, and that number rises to 77% for “young disabled people.” Sense also reported that 49% of non-disabled people think that they do not have anything in common with their disabled peers, and 26% even admitted that they actively avoid interactions with disabled people (sense.org.uk). A 2018 survey from the Henry J. Kaiser Family Foundation found that in the US, loneliness is an increasing issue across the board with 22% of adults reporting that they “often or always feel lonely, feel that they lack companionship, feel left out, or feel isolated from others.” The same survey found that 45% of adults with disabilities reported feelings of isolation and loneliness (kff.org). People with mental health conditions were also found to be disproportionately lonely. I believe these statistics reveal a clear social need that is not being met: inclusive and accessible sources of community, and integrated social institutions. Whether through separation of disabled students in school settings, lack of disabled people’s participation and leadership in communities and workplaces, or lack of representation in media and storytelling, many of us receive the message that including disabled people is a burden. This narrative drives stigma, isolation, prejudice, and loneliness. Furthermore, loneliness itself has been found to have detrimental effects on people’s physical and mental health (mwhealth.org). The social isolation disabled people face due to stigma, ignorance, and lack of accessibility isn’t just an inconvenience, it’s fundamentally destructive to our well-being.
Disability rights activists are working to combat this stigma and introduce new narratives around disability and inclusion; activists Mia Mingus, Alice Wong, and Sandy Ho recently launched a campaign to this end called Access Is Love the goal of which is “to build a world where accessibility is understood as an act of love.” This campaign and similar work reframe the inclusion of disabled folks as an important act of love-driven justice and equality. When I reflect on this, it seems like common sense for anyone who believes in unity and equality. Surely everyone loses when 26% of the population isn’t adequately included. My impairments may come with challenges, but I also bring many gifts and insights to any table at which I am included. The inclusion of me and other disabled folks is worth every effort to provide access, not only for us, but for everyone who gets to share connection with us. Non-disabled people also benefit from disability justice work and the combat of ableist stigma. The chronic stress, lack of rest, and isolation across the US are also rooted in the ableist cultural narratives that define human worth by individual’s capacity to produce material wealth. When we embrace the idea that as human beings we possess inherent worth and that our strength as a species lies in our capacity for connection and empathy, the false separations we create among ourselves, including those based on rigidly designated definitions of ability and worth, are revealed to be a weakness not only for those who are marginalized, but for everyone.
[Disclaimer: In this discussion of the social model of disability I am not making any argument about what terms anyone should use to identify. Although the social model uses the word “impairment” to talk about condition-caused limitations, I still use the terms, “disabled” and “chronically ill” to name this part of my identity and life experience, and I fully believe that everyone should get to choose their identifiers for themselves. I also know that the social model doesn’t resonate with all disabled folks. However, I have found the social model to be a useful tool for processing how social isolation prevents my thriving far more than my chronic symptoms, a comforting reminder that I am not alone in this experience, and a hopeful guiding analysis for social progress towards full inclusion.]
“Social Model of Disability” from Scope UK
“Disability Impacts All of Us” from the CDC https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html
“Loneliness” (report cited is in the downloadable document, “Someone Cares if I’m Not There”) https://www.sense.org.uk/support-us/campaign/loneliness/
“Understanding Social Isolation: Chronic Conditions” https://www.mwhealth.org/Portals/0/Uploads/Documents/Understanding_Social_Isolation_Chronic_Conditions.pdf
“Access Is Love” https://disabilityvisibilityproject.com/2019/02/01/access-is-love/
Bonus suggested reading:
“Places to Start” (10-point accessibility outline) https://www.disabilityintersectionalitysummit.com/places-to-start
My related reflections:
Acceptance (Part 1): https://haileyjs.wordpress.com/2019/06/06/acceptance-part-1/
Treatment Burnout: https://haileyjs.wordpress.com/2018/12/20/treatment-burnout/
Chronic Illness, Mental Health, and America’s Obsession with Self-Sufficiency: https://ignitedmag.wordpress.com/2017/05/28/chronic-illness-mental-health-and-americas-obsession-with-self-sufficiency/
Breaking Free From the Productivity Myth: https://haileyjs.wordpress.com/2018/02/28/breaking-free-from-the-productivity-myth/