I recently had the pleasure of taking two courses focused on disability that served to broaden my understanding of the realities and challenges of living in the world as a person with a disability. This was made possible due to the Professional Development Grant available to Fellows as part of the AIF Banyan Impact Fellowship. The first discussed healthcare and attitudes around the world and through time for a disabled person. While the second shared the ways technology has changed the way people with disabilities interact with the world and how disability affects the way they interact with new technology. Throughout these courses, I found myself oscillating between emotions ranging from being shocked to appalled to pleasantly surprised. And at some points, I even had to contend with my own biases and preconceived notions about what it means to have a disability.
Disability and Healthcare
Through edX, I took a course called Able101x: Through My Eyes – Intellectual Disability Healthcare around the World. The focus of the course was what healthcare looks like and healthcare attitudes towards people with disabilities in countries around the world. Through a series of interviews with individuals from various backgrounds, including persons with disabilities, their family members, healthcare providers, or other community members, we get to hear firsthand accounts of their experiences.
The part of this course that I found most interesting was the discussion of the attitudes of healthcare workers towards people with disabilities. In particular, how poorly some medical care providers treat them and how that poor treatment is seen as the standard. Stories of providers giving half-hearted and subpar treatment, requiring restraints before agreeing to even interact with the patient, or just downright refusing to treat patients with disabilities because they have written them off as dangerous or a lost cause without even bothering to get to know them as individuals.
My Takeaway
The module is filled with many similar stories, including those of parents being told to place their child in a care facility and basically forget they exist. The way that families combat these ideas has been to become fierce advocates for their loved ones. They argue for them to be seen, for the provider to meet the patient where they are instead of expecting them to behave as though they are a non-disabled person. I cannot say that I am surprised that such fervent advocacy is necessary for people with disabilities to get the bare minimum of treatment, let alone receive proper in depth care. The need for such advocacy speaks to a larger flaw in the healthcare community, because there are countless studies showing that women and people of color often have to fight for years and see multiple doctors to get a single diagnosis. Therefore, the biggest takeaway is that being unheard by practitioners, is not solely a disability issue but it does affect vulnerable communities at disproportionate rates.
Disability and Technology
The second course I took was Disability and Digital Media: Accessibility, Representation and Inclusion, which was also offered through edX. The focus of the course was how emerging technologies and media affects the lives of people with disabilities. It spoke of identity, social media, accessibility, different models of disability, and technology’s use as a tool for activism and autonomy.
The course begins by making a distinction between the social model and the medical model of disability. The medical model, which is most prevalent, frames disability as a result of deviation from a perceived ‘norm’. Essentially placing both the responsibility and blame on the individual. Whereas, the social model frames disability as a form of social oppression forced onto people who have an impairment of some kind. Meaning that a lack of inclusivity and accessibility prevents someone with a disability from participating rather than their own inability.
The course then goes on to discuss using social media while having a disability and accessibility as it relates to the digital world. What I found to be very interesting because I, as an able-bodied person, had never thought about, is that seemingly “cumbersome” technology may only seem that way because I am not the target audience. For example, with self-driving cars, I have seen several articles depicting them as the pinnacle of laziness and needless accidents waiting to happen. However, in one section we hear from a blind man who test drives a self-driving car. He speaks of the independence and freedom that being able to drive would give him as he is currently limited to other people’s schedules or wherever he could get by walking.
Why It Matters
The takeaway for me is the importance of looking outside yourself before immediately judging something. There are countless actions that we all do each day without a second thought. Whereas, for someone else, it would require significantly more steps. Due to the prevalence of the medical model, we often expect people with disabilities to cope and scoff at interventions that are made to include them. At one point, elevated buildings were only accessible by stairs and ramps were scoffed at. But now, in many places, having ramps is the standard and required by law. Ramps are often even used by people without disabilities such as the elderly a or an injured person. Inclusion and accessibility benefits everyone. Therefore, before you scoff at the next seemingly “lazy” technology, think of who that technology might empower.
Across the two courses, I found that people with disabilities face many more challenges than I would have thought. While the challenges range from medical exclusion to day-to-day challenges like accessing a building, the fact remains that these challenges affect them at a higher rate than the average person. These courses gave me great insight into the lives of people with disabilities and I will continue to think about them.
