Special Parentability Podcast

Medical Ableism and How to Combat It

A survey study conducted by Harvard was published last week and of the 714 practitioners and medical physicians surveyed 82% of them reported that people with significant disabilities have a worse quality of life than non-disabled people. Only 40% of them felt very confident about their ability to provide care for people with disabilities, and only 56% of them felt enthusiastic about welcoming patients with disabilities in their practice. And 18% strongly agree that the health care system treats patients with disabilities unfairly. Stunning to see these numbers!

The statistics are disheartening, and that's why in this episode, I'd like you to talk about medical ableism. How do you handle ableism? Ableism is the assumption that non-disabled bodies are better than disabled bodies. A medical professional who's good at diagnosing and coming up with treatment plans and offering ideas about therapies and medications. In the back of their mind, they assume that the goal for the family with a disabled child is to have that child be typically functioning above all else. This assumption is wrong. The main goal is for the child to have accessibility and be accepted for who they are.

Ableism is hard. The first thing we should do to deal with ableism is to assess our ideas and believes on disability. It is essential to note that evaluating our ideas and assumptions is a continual process. It is not a one-off thing.

Find some adults with disabilities and follow them (Here are a few I love on IG: Nina Tame , Carson Tueller, Andrea Dalzell and AbleismisTrash) and you have to agree with everything they say. You can follow them online or offline. It has been so helpful for me to follow and as much as I can, and these COVID times interact with in real life with adults who have disabilities. It gives me a whole perspective on life that I don't have from my lived experience. It helps me so much think about looking through those lenses or having that perspective for Eli.

Always consider the internal and external expectations. If you go to a practitioner who exhibits blatant medical ableism, it would be good if you kept away from them.

Taking action in a medical appointment. It's hard to take action in a medical appointment when there's this power differential between a practitioner and a parent to speak up. Always do the best you can at that moment. If you feel like something is not okay, take time to process and find a way to communicate. You can write an email, a letter, or even make a call.

Lastly, learn to listen to your child. Sometimes it isn't easy when a child is not super verbal. Believe in their experience, watch how they interact and react, and always do your best to be in their shoes, your child's shoes. Always trust your gut, especially in situations where your child is too young to communicate or can’t communicate.

If this helped you feel supported, answered a question, or taught you something new. Please do me a quick favor. Leave a five-star review for this podcast. It would mean so much to me as this podcast is still very new, and reviews help other special needs parents like us find this show.

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Picking the RIGHT Practitioner for YOUR Child: Part 2- Medical

I have been a type one diabetic for 31 years, and now I've had a child with complex special needs for six and a half years. Through my experiences, I have loads of experiences that I have gathered over time. In this episode, I will be sharing four great points on the selection of a medical practitioner. I will be heavily relying on Dr. Jerome Groopman’s book, How Doctors Think.

Scope of competence versus the scope of practice: No practitioner can be an expert in all areas. The pace of research and publication to stay up to date on the latest stuff is just too great so doctors and therapists all end up specializing in one little area. The easiest way to know a practitioner’s specialization is to look at their bio on the website. To dig deeper into what they are about, you can Google their full name with quotation marks around them to see the publications under their name. If that’s not enough, you can look them up on PubMed.
Look for a thoughtful partnership: Always look for someone who is willing to have a discussion, everyday open conversations, keen to get into the nitty-gritty with you. According to Dr. Groopman, if you sense a practitioner’s negative attitude, you're not imagining it, and if you do, you need to find another doctor. Once you find a thoughtful partner, be careful not to let them become hesitant about pushing for invasive testing or procedures.
Do your homework: The partnership you get into with your practitioner is not one way. You have a responsibility of always being prepared. Part of that is that anytime we go unprepared, we're risking an increase in confirmation bias. Take time to research your child’s condition and always trust your gut.
Medical Ableism: Some people would argue that over the last 10 to 20 years, there's not as much of this power differential between physicians and patients. It may be true for nurses for typical patients, but I think this is still an issue in the disability community. When you notice ableism, I believe it's on us as parents to address it in whatever way is appropriate, whether that's writing a letter an email, making a phone call to the human resources or practice manager, or the practitioner themselves. It's not just for our kids; it’s for the other kids that are going to be seen by this practitioner.

With the four points, I believe you are in a better position to make an informed decision. If this episode helped you feel supported, answered a question, or taught you something new. Please do me a quick favor. Leave a five-star review for this podcast. It would mean so much to me as this podcast is still very new, and reviews help other special needs parents like us find this show.

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Ever wanted a doctor to take an in depth look at your child's entire health and wellness situation? Then you are in luck! In this episode we discuss exactly that and it is called functional or integrative medicine. It could be just the thing for you child with complex needs.

For full show notes and transcript of this episode HERE.