Damaging Assumptions

Hello and welcome to another week at Humbly Courageous. If you are new thanks for stopping by! My hope is that you will learn something new about disabilities, be able to relate or feel less alone by reading my blog posts. These are the experiences lived by me, a lifelong disabled person. I live with Muscular Dystrophy. I openly share the good, the bad and the in between. I am a wife and mother of two boys who are my heart and soul.

If you have a disability or any other chronic medical diagnosis, then the waiting rooms of doctor’s offices can start to feel like your second home. After 48 years, it's very safe to say that I've seen my fair share of hospitals and doctor's offices. As you can imagine, I have encountered many types of personalities, opinions, good bedside manner, bad bedside manner, and absolutely horrific bedside manner. I learned what that term meant very early on in life. To be honest, I could count on my hands the number of doctors who I would qualify as having good bedside manner over the last 48 years. My standards aren't even that high. They include respect, ability to listen, not making assumptions because I am disabled, and just being a kind human being. Somehow, many miss the mark. This is not a post to bash doctors. I have had many who have helped me in many ways, good bedside manner or not. Certainly, it's a huge plus when they embody that quality. 

A happier medical visit 

The experience I'm choosing to share with you is very raw still. It happened mere hours ago. This appointment with this doctor was, BY FAR, the most degrading, humiliating, dehumanizing, discriminatory experiences I have ever had with a medical professional. 

The point of this particular visit was to discuss my sleep. For as long as I can remember, way way back to when I was just a little girl, I have been a horrible sleeper. If you deal with this too, you feel my pain. It's a curse! The slightest noise wakes me up, that is if I even manage to fall asleep in the first place. It's always been kind of put on the back burner because I had other more pressing medical concerns related to my disability most of the time. I have learned to live with it, and have made adjustments as I can to try and help. No sleep, coupled with a neuromuscular condition, is an absolute recipe for disaster. I've lived through it, especially after my boys were born. The lack of sleep took a MAJOR toll on my already weakened muscles, and it was causing a lot of falling, and just poor health in general. I was at a high risk for injury. This pattern has continued for years, and I have tried many different sleep remedies throughout the years to try and help. Some have worked, some haven’t. 

At a recent visit with my pulmonologist, I brought up the fact that I sleep very poorly. He thought it would be a good idea to meet with a sleep specialist to see if I could try to get to the root of the problem. Sounded like a great idea to me, and I was excited to possibly have a permanent solution to this issue. A video visit was scheduled with a doctor who was new to me. 

The visit started as many of my visits do with a new provider, usually with them having read bits and pieces of my lifelong medical history and most not familiar with Muscular Dystrophy. She asked me a few questions about my diagnosis, mostly related to my mobility. I told her that walking is hard, but most of the time I walk, and use a scooter for long distances. I told her that I have two children. Throughout the visit there were little remarks made that were leading in a direction that I didn’t agree with. The part of the visit that was the most upsetting was when we were nearing the end of the visit and she said to me, "since you do not exercise and get outside due to your condition, that is likely affecting your sleep". Ummmm, what? She had not asked me once if I was able to exercise or leave my home. She was assuming because of my disability that I do not exercise or leave my home to get sunlight, and she suggested I buy a light for artificial sunlight. I was honestly stunned for a second as she just kept on talking like she had not offended me in the most degrading way possible. As an avid exerciser and someone who goes outside daily, I took great offense. How is this real? Why are medical providers under the assumption that people with disabilities do not exercise and/or leave their homes? What? I mean, I still can't even wrap my head around this. It's times like these that I question if all the work I do to try and raise awareness surrounding disabilities, and doing my part to show how the assumptions about disabled people are very often inaccurate, is all for nothing. 

For the record, after recovering from that blow, I politely set her straight. I told her that I do in fact exercise several times a week, eat well and get outdoors on a daily basis. Imagine that! Her response, was… surprised. A few years ago, I would have probably ended the visit not speaking up for myself, but not anymore. I am not obligated to continue on with a doctor who has such a poor image of a disabled human being. If you think these types of experiences aren't happening to disabled people regularly, then you are misinformed. I will be following up with the appropriate people to let them know about this encounter with this doctor. I just cannot let this one slide by. If you can't tell, these assumptions affect me, as a disabled human, deeply. If you have not ever felt socially oppressed or encountered ableism, then maybe you don't understand. Its real, it's damaging, scarring, traumatizing, dehumanizing, all of the above. 

It took humble courage for me to stand up to her, and tell her that she was not right about her assumptions about me. All she had to do was ask me if I exercise or leave my home like she would be asking anyone, disabled or not. It shouldn't be that before even meeting me, she has already prejudged me on my approach to life. Disabled should not automatically equal incapable. Please, please stop doing this. If you are a medical provider reading this, please by all means stop and think about what I have said. It isn't just me that this is happening to. I am one voice of so so many. Educate yourself on disabilities, get to personally know some of the wonderful, capable human beings of the disabled community. To be clear this is not meant to be a woe is me type of post, it's meant to be a hey, this is me! type of post. 

In closing, I would like to share a quote from the late Judith Heumann, also know as "the mother" of disability rights movement. The disability community suffered a great loss when she passed away last week at the age of 75. I had hoped I would be able to meet her one day. If you don't know who she is, I would encourage you to explore the life and legacy of this amazing, disabled human being. Because of her humble courage, she empowered the many following in her footsteps to try and make the world a more inclusive place for all. 💚