Guest Blog: The Daily Struggle of Ableism
Rachel McCallum is a long-term survivor diagnosed with Anaplastic Astrocytoma of the 4th ventricle of the brain stem in 1993. Her experience as a long-term survivor has encouraged her to become an advocate for others like herself who have struggled with the transition from pediatric patient to independent adulthood.
This is the eighth in a series of guest blog posts by Rachel. Catch up on her earlier posts here.
Ableism is one of those complex issues - like most “isms” - that is further complicated by the biggest “ism” in America: capitalism. Essentially, ableism is used to make “other” of people that are different. To get a better sense of what ableism actually looks like, I suggest looking at these 25 Examples of Ableism to Avoid as an Ally to People With Disabilities posted on The Mighty.
Why do I bring ableism up? As a person with subtle disabilities - caused by a pediatric brain tumor and its treatment - external and internal ableism is something I struggle with daily. For a better understanding of what constitutes internalized ableism, see this blog post by disability advocate Imani Barbarin.
I’ll also give some examples from my own life:
I typically wake up fully capable of making and consuming breakfast, showering, and getting dressed on my own. I’m not in need of a personal care attendant, and I don’t use a mobility aid. Often I fear I’m not “disabled enough” to speak on such matters as ableism.
On some days, my depression makes it seem almost impossible to do even these basic things, but because of our ableist/capitalist culture, I feel that I not only must perform these menial tasks but must also be “productive” and write something profound or do all the household chores. Let’s just forget - for a moment - that the past year has been so universally challenging that many people, regardless of disabilities, are feeling this way.
“I was almost always the one physically disabled kid in the classroom, and almost always one of maybe just a few Asian Americans. So there were never any spaces that reflected me.” @SFdirewolf
— Elena Hung 🗽 (@ElenaHung202) May 7, 2021
Here's to creating more spaces. 💪#RepresentationMatters https://t.co/d8VD9xkocE
Still, when I think of other, more visible, disability advocates like Imani Barbarin (@Imani_Barbarin) or Alice Wong (@SFdirewolf), I feel a sense of imposter syndrome. I am not marginalized enough to speak. I am a White, middle class member of society whose main problems are hearing loss (only deaf in one ear) and an eye that won’t close properly. I feel that there is more going on with my neurological processing and balance issues, but it’s difficult to get the medical community to recognize the day-to-day issues I have when I do so well on tests in the office.
For a better understanding of imposter syndrome and the stereotype threat that goes with it, I refer to this post by Sheri Byrne-Haber.
Recent experiences that fueled my imposter syndrome occurred when I got involved with #CripCampVirtual. When I say involved, I mean I witnessed the webinars live each week, not that I had anything to do with their existence. This was a series of Zoom presentations held last summer inspired by the Netflix documentary Crip Camp. It included speakers like the above-mentioned disability advocates and even President Obama. There was a Facebook group in which to participate and some other groups that sprouted out from it. Discussions frequently centered around the disability justice movement.
As a social work graduate, I understand the need to study issues from an intersectional lens, and I recognize my own privileges. But sometimes discussions like these make me feel uncomfortable, as if it’s wrong of me to speak up or share my experiences as a straight, middle class, White person - disabilities or no. I sometimes feel like my speaking up would lessen the voices of more marginalized people. However, I do feel I have a unique perspective to share, and these feelings haven’t stopped me from, say, sharing them on this blog.
At the start of summer 2020, I had just graduated with my MSW degree, which had demanded quite a bit of emotional labor from me as a grad student with disabilities over the previous two years. I had to take a break as a means of self-care. In social work school, we’d been told to focus on self-care, because you can’t very well take care of others if you aren’t taking care of yourself.
Along those lines, I’ve chosen to focus on my online disability and childhood cancer-related advocacy rather than jumping straight into the social work profession during a global pandemic, which would ensure instant burnout. The ableism evident in academia and the social work profession can be exhausting in a typical year, so to attempt to start a career during a global health crisis did not seem like a smart move.
It was rather disheartening to learn of the ambitious diversity equity and inclusion (DEI) initiatives planned by a larger university - and the social work school in particular - only to find that they did not appear to make disability a priority. The school of social work I attended piloted a required course based on DEI while I was there, but had I not brought up my own experiences and started a class discussion, “disability” would have been a mere bullet point on the professor’s PowerPoint.
“Ableism has been a key issue throughout this journey as I’ve struggled with my identity as a ‘disabled person.’”
In addition, the field of social services itself can be a rather ableist one. The idea that people who have gone through something similar are the best ones to help others in their situation is not new. Peer mentorship has been a part of social services for quite some time. However, peer mentors are often volunteers or paid very little. Even most of the licensed social workers I know have spouses who also work and are not the sole breadwinners in their households. Of those, I’m also fairly certain that they never had to hesitate about getting married for fear of losing federal disability benefits. For more on marriage rights for people with disabilities, I suggest looking at some of the work by advocate Dominick Evans.
The truth is that disability is and should be a major social work issue. Ableism is a major issue that should be looked at with the National Association of Social Workers code of ethics in mind.
It should also be noted that a quarter of Americans will have a temporary or permanent disability at some point during their lifetime, regardless of other marginalized status. This is something we knew before Covid-19 turned our world upside down. It’s unknown what long-term effects those diagnosed with Covid-19 will experience in the coming years, but they will surely bring those numbers up.
For more details on why we need to get rid of ableism in the social work profession, I highly recommend checking out the #CrippingSocialWork hashtag and accompanying blog posts.
Stay tuned for my next blog in which I’ll discuss the career issues I’ve faced as both a survivor and a Millenial. Subscribe to the Children’s Cancer Cause blog to receive an email alert when there is a new post in this space.