How the healthcare industry needs to better accommodate people with disabilities
By Kimberly Tissot | Executive Director | Able South Carolina
Almost 30 years ago, President George H. W. Bush signed the Americans with Disabilities Act (ADA), requiring equal access and integration for people with disabilities. This is perhaps the most significant moment in modern disability rights history.
As we come up on the 30th anniversary of the ADA, it can be easy to throw around words like “inclusion” and “progress,” and pat ourselves on the back for a job well done. However, individuals with disabilities still struggle to receive the basic accommodations and care they need from the very industries that exist to serve them, like the healthcare industry.
For people with disabilities, accessible healthcare isn’t just a political talking point but can be, and often is, life and death. It’s time we South Carolinians face this reality.
The medical model of disability can often be problematic. While focusing on a person’s medical conditions is important for addressing health issues, it is important not to overlook the human being treated. Treating only the condition forwards the idea that disability is a deviance that must be cured or treated, focusing on perceived deficits over individual strengths.
Medical providers are often quick to tell people with disabilities or the parents of children with disabilities that they won’t be able to live a “normal” life. They aren’t viewed as people, but rather as their medical conditions.
Instead of encouraging capability and independence through assistive technology and other support systems and tools, medical providers are quick to recommend overly restrictive actions and settings, like guardianship and nursing homes, without communicating with the individual about their desires. They are already focused on what a person with a disability can’t do rather than what they can.
For many years of my life, I did not know how much I weighed. It wasn’t from lack of concern or trying; none of my doctors had a scale that was accessible for me. Because of my disability, I can’t balance on a traditional scale, which was all that my doctors had.
It took years of self-advocating and pushing my doctors to finally encourage them to get a universally accessible scale. Something so simple and routine for the larger community, such as keeping track of your weight, was something that was never available to me and many others.
This example is just one simple way the healthcare industry has failed to accommodate people like me. My experiences, like my disability, are individual, but my story is not at all unique. As the executive director for Able South Carolina, a cross-disability, non-profit center for independent living, I hear stories much worse on a regular basis.
In February of this year, distinguished disability rights activist and attorney Carrie Ann Lucas died shortly after her insurance company denied coverage of her necessary medication. Her medical conditions and disabilities worsened as a result, and she died at 47 years old. This lack of responsibility on the part of the insurance company led to this woman’s inability to access medications that could have saved her life.
My attempt to raise awareness is not intended to be a slight to any offices, agencies or doctors, but to bring attention to the fact that when people with disabilities aren’t in the rooms where policy decisions are being made, then the system will never be made to properly include us. If people with disabilities aren’t considered and included in medical education and training, then our accommodations are ignored or only factored in as an afterthought. We are the experts on our bodies, and we need to be viewed and consulted as such.
It is long overdue for the healthcare industry to accommodate the almost 728,000 individuals with disabilities in South Carolina. That’s 728,000 lives hanging in the balance of a system that is failing to accommodate the very people they were made to serve.
Kimberly Tissot proudly serves as the executive director of Able SC, where she guides the staff in applying the philosophy of independent living to real situations. In 2017, Kimberly led the efforts in the passing of the Persons with Disabilities Right to Parent Act in South Carolina, and in 2018, the S.C. Employment First Initiative Study Committee.