This might come as a surprise, but hospitals and medical facilities are not necessarily ADA (Americans with Disabilities Act)-compliant. As a Pompe disease patient, I realized a couple of years ago that while hospitals are wheelchair accessible, they are not in compliance with several other ADA requirements.

Of course, elevators are on every floor and doors open automatically or with a push-button, but doctor offices are small, sometimes too small for an electric wheelchair. And the handicap stalls in the restroom are not big enough to fit an electric wheelchair, and waiting rooms do not have spaces specifically for wheelchairs.

I would like to be able to go to any medical appointment and have everything go smoothly. Many people with rare diseases use wheelchairs and our wheelchairs are specially designed for our bodies. That means we need them to the point where we can not transfer out of them as easily as others. Do I want random nurses picking me up to lay me on the patient chair in the doctor’s office? 

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Even though I’m thin and lightweight, I’m still fragile and have to be handled carefully. So excuse me for expecting Hoyer lifts to be available in these kinds of situations. The technology and equipment are out there. No, I don’t want to wait until my next physical to get my weight because no one can find the special weight Lyft. No, I don’t want to reschedule my dentist appointment because the mobile X-rays are not working, and please don’t keep me waiting hours just because I need the bigger room for an eye exam and it wasn’t prepared for an electric wheelchair. 

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I understand that it’s not realistic to have everything accessible for me everywhere I go. But I would like more medical services to experience having customers, clients, and patients with rare diseases. Physicians may not be aware of the wheelchair-bound lifestyle of a person. Of course, it’s obvious that it is challenging but because the outside world is not always accessible, we lean toward the medical arena to set the standard, raise the bar.

Those expectations for medical professionals are high because rare disease patients spend so much time in their environment.  We expect to have the proper equipment available and ready for us during a regular examination. Why do we have these expectations? Because doctor appointments are a big part of our lives.

As a woman, our bodies are designed beautifully complex to reproduce. That means certain examinations such as Pap smears and mammograms are especially necessary. However, the equipment used for these exams doesn’t always work for patients with rare diseases, those who are disfigured from a disability.

I can see the frustration and even the confusion of nurses during an exam. They are not, in my experience, trained to work with patients with disabilities. There have been countless times when a nurse took one look at me and went to go ask another nurse for assistance on how to perform some medical task.  I have no idea what is taught in nursing school relative to rare disease patients, but I can only hope that a topic about working with patients with disabilities is part of the curriculum.

No one is to blame here. But there has to be change, and that starts with communication. The technology is out there. I have no problem calling a place ahead of time to make sure they’re aware of my disability and have the proper equipment ready for me. But physicians have to do their part as well. Be prepared for us. If I called ahead and mentioned my special needs there’s no reason why everyone is dumbfounded on how to exam me. 

Don’t have me travel 30 minutes when everyone knew the mobile equipment isn’t working. It’s extremely disappointing when hospitals and medical operations are not up to par. Don’t get me wrong, hospitals are wheelchair accessible, but only to an extent. 

So what do we do about this issue? Considering that most hospitals were in fact built decades ago. I ask this question to everyone working in the medical field: How do we make it easier for your patients with physical disabilities to be treated in your work?