We all should advocate for our healthcare rights
National laws and international organizations back up what we're entitled to
Last week, I had my annual echocardiogram, known informally as an echo. My doctors want to keep an eye on my heart function because I have Friedreich’s ataxia (FA), and one of its more serious symptoms is cardiomyopathy. Monitoring my heart is crucial to detecting any changes early and initiating treatment as soon as possible.
I always approach any diagnostic testing with unease. As I’ve previously mentioned, I can’t help feeling that my results might not be normal, even when they typically are. Since cardiomyopathy is a fundamental threat with FA, I suppose it’s natural for me to worry about echo results.
However, I stress less over those results than I do about the vague, constantly looming feeling of “I have FA, so something might be going on with my heart,” which I’d have if I didn’t get an echo. Once I know my results, which have been normal so far, I can let go of that anxiety for a year. I’m grateful for my normal results; many with FA don’t have them, and I wish they did.
I can’t emphasize that enough: I’m grateful to be privileged enough not to have heart trouble. Being 62 and still enjoying life despite FA is something I very much value.
The other, perhaps less obvious, reason I worry about various diagnostic tests is because I’m unsure how the technician or other person giving the test will handle my wheelchair use, lack of coordination, and diminished strength. Generally, I’ve found that I’m less stressed with techs who ask me what I need, explain what they need, and problem-solve with me, instead of for me.
That’s exactly what happened in my most recent echo. In fact, the tech was able to test me while I was in my wheelchair, and I was so happy I didn’t have to transfer to the exam table. You might not be able to have your echo from your wheelchair, but perhaps you and your tech can work out a solution that’s best for everyone’s needs.
This routine part of living with FA made me think about my rights in medical settings. I had the sense that, as a disabled American, I’m protected by the Americans with Disabilities Act (ADA), but I didn’t know precisely how.
What are my rights?
I decided to educate myself about those protections. This, briefly, is what I found, including some international expectations. In all cases, I encourage you to dig deeper and know your rights in all medical care.
In the United States, we’re entitled to fair and accessible medical care under various laws and policies that protect our rights and dignity. The ADA requires healthcare providers to ensure their facilities, services, and equipment are accessible to people with mobility disabilities. That means medical offices must have accessible entrances, examination rooms, and restrooms, along with adjustable exam tables and scales. It’s your right to request reasonable accommodations, such as help with transfers or accessible communication formats, so that you can participate more fully in your healthcare.
In Canada, similar protections are provided under the Accessible Canada Act (ACA) and provincial human rights codes, which mandate barrier-free healthcare environments for people with disabilities.
Beyond physical accessibility, your rights under ACA and ADA extend to respectful, person-centered care. Healthcare professionals are expected to provide treatment that recognizes your autonomy and preferences, including informed consent and privacy.
According to the World Health Organization, accessibility is a key component of the right to health. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) enshrines these rights. Article 25 of the CRPD explicitly states that people with disabilities have the right to the same range, quality, and standard of free or affordable healthcare as others.
If you face barriers or discrimination in healthcare settings, you can seek help through legal complaint channels and advocacy groups. If your rights are violated, you might find the National Health Law Program or other disability rights groups to be useful.
Admittedly, I’m not good at demanding the rights I’m entitled to. Maybe I can psych myself up to be a better advocate in this area. I’m going to try to remember that by pushing for my rights, I’m increasing the chances that the next person with a disability who enters that doctor’s office will be treated with the care and respect they deserve.
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.