Examining the Intersection of Disability and Health

Can you be disabled and healthy at the same time? Disability has a relatively universally accepted objective definition: an impairment of some sort. Whereas I think health can be more subjective. After all, what is good health? And I think there can be even more of a grey area when you bring in the word disease. I think you can have a disease that causes a disability, but you can be disabled and not have a disease. It's the intersections of disease and health, and the often misunderstood biases around disability, that I think can be very harmful to disabled people's inclusion in society.

Being disabled can be a very medically-centered lifestyle. We have to see specialized doctors, go to therapy appointments, deal with durable medical goods companies, fight with insurance companies, follow specific treatment plans… all the things. As I like to say, it is what it is.

One of the disturbing things for me is the perception that disabled people are sick, unwell, or unhealthy. I think there is a subtle, often unspoken ableist bias that disabled people are "broken" and need to be "cured." And often, this characterization comes from the people we need the most NOT to have it come from: our family, our employers, and our care providers themselves.

When I go to my doctor's appointments, I make it a point to distinguish between my condition of being disabled and my health's current condition. For example, if I go to urgent care for an ear infection, I don't expect the doctor to ask about my Scoliosis. And if he/she does, that is a warning sign that I need to direct the conversation and the treatment plan intentionally. Not exactly a fun thing to have to do when you already aren't feeling well, but hey, that's how it is sometimes. Likewise, if I am going to my physical therapist to work on range-of-motion issues, I don't expect them to want to take my temperature. The implied understanding I want everyone to understand about me is yes; I am disabled, but I am also healthy.

And then there are medicines we sometimes have to take to help keep us healthy. Is the medication an indicator of illness or health? What about vitamin supplements? Why is my Vitamin C pill perceived as less a quantifier of my health than my Lisinopril? Isn't the point of me taking my medicine, so my heart remains healthy? Why, then, do we tend to focus on the high-blood-pressure-part of that equation and not medicated-to-be-healthy-heart part?

Now, I should add that I realize I am making some assertions based on some significant assumptions. Every single person is different, and so is their circumstance. If I tried to make a caveat for every possible scenario, this blog post would be five pages long!

There are some real-world implications when it comes to defining health and disability. And it is easy for the lines to get blurred, causing both physical and financial hardship to many people. One group of people this is hitting hard these days are COVID-19 long haulers. Many COVID long haulers were very healthy before contracting the virus and had no, or very few, pre-existing conditions. After getting sick with the virus, however, they are unable to return to full-time work, are in and out of doctors offices, and are having to take a crash course in seeking help through sort and long term disability insurance, and in some instances applying for Federal Social Security SSDI benefits. Despite having earned these benefits through their years of employment, long-haulers have to navigate the unjust and arduous bureaucracy of the SS application system. A system that was not designed to deal with the COVID long-haul health condition. The definitions and determinations by insurance companies, various medical doctors, and others often feel like an arbitrary manner and can leave a person feeling completely powerless and overwhelmed. Unfortunately, many people are pushed into poverty while health organizations and government agencies make benefit eligibility determinations. This is unacceptable.

The mission for Love Disabled Life is to bring awareness to the issues facing disabled people and to destigmatize what it means to be disabled. But I'm mainly in this instance referring to disability as an identity and, collectively, as a community. How people individually identify as disabled or allow themselves to be classified as disabled by the government, or their employer, is part of their individual journey. That is not for me to judge. Of course, I understand that some painful and debilitating diseases can cause disability that I would not want for anyone. Some diseases can cause a person to be disabled AND unhealthy. I absolutely acknowledge that those situations exist. I don't expect people to openly embrace their disability status (either temporary or permanent) if it is being caused by something like COVID or cancer. But what I do hope is that if their health or condition comes to a point where they are now disabled somehow, they can come to understand that it doesn't make them less of a person. It's at the very least neutral. It's not great, but it's not bad; it just is.

Overall, I wanted to write this post to start a conversation around disability and health because I don't think it gets talked about enough. Because of that, we need to make a lot more progress in understanding the importance of advocating for our bodies and our health, whatever our current health status may be. And to remind disabled people to speak our truth to power regarding our bodies and our health. We get to write our own rules defining what is, or is not, the state of our condition. Yes, there might be some objective truths that exist. But even with those truths, we still have agency to define for ourselves how we are addressed, treated, and defined.