Changing negative attitudes of professionals about people with intellectual disabilities

By Chaqueta Stuckey, 2023 Social Connectedness Fellow

As a person with intellectual disabilities, I have experienced many challenges.  I know that many people may not get well-rounded treatment from some medical professionals.  There are way too many stories that happen around this attitude.  Some important studies show that medical professionals have negative attitudes about people with disabilities.  More recently, in my hometown it was reported that a little 3-year-old boy with autism did not get fair treatment in a local dentist office because he was having a tantrum. 

It makes me wonder, why should disability be a problem with medical professionals?  We know that health professionals’ attitudes affect the quality of care that people with disabilities receive.  So, is there not enough information covered during the foundation on studying in any medical profession?  Well, we know that not a lot of persons with disabilities overcome the barriers they face to get into medical school.  We also know that many medical students with disabilities face pressure to not disclose their invisible disabilities.  To me,  it comes down to this: some medical professionals are not educated about people with intellectual disabilities, and that needs to change.  In an article published by Disability Scoop, Dr. Nancy Murphy of the University of Utah shares important awareness to how medical professionals lack awareness.  This gives me even more passion to want to bring this concern to workers in medical professions.   

When it comes down to it, I don’t need studies to tell me about medical professionals’ disability biases.  And I don’t need to read what health care providers write about people with intellectual disabilities to know how some medical professionals think.  I have seen these attitudes in my own life, the same way that many other people like me see the same thing throughout our nation.

My personal story begins with my mother assisting me at my medical appointments.  My own physician who I am so fond of would only greet me. He never gave me eye contact nor talked to me directly.  He always spoke directly to my mother as though I never existed during the visit.  He never asked my opinion, only my mother got respect.  After a few times of facing this type of attitude, I finally expressed myself and said, “I’m the patient, it’s my appointment and you need to talk directly to me and not my mother.”   While my physician was apologetic, I did not need an apology:  I wanted his attitude to change because it was hurtful.  He really did not see me as a person.

Thankfully, there are groups that are working hard to change medical professionals’ attitudes about people with disabilities.  I also want to share some ideas that can help change these attitudes.  For medical professionals, they should be aware of these 4 R’s:  

1.   Respect me, always

Everyone should be treated as equals.  For example, if I go for an office visit, I expect the same treatment as anyone else.  I also expect that my friends who cannot speak for themselves, be respected. One of my favorite authors, Norman Kunc’s credo for support says, “Do not adore me, a desire to live a full life does not warrant adoration.  Respect me, for respect presumes equity.”

2.   Relationship building

Get to know me.  Call me by my name.  I want the same kind of relationship you have with other patients.  I am just like you: I need connections to make things happen.  We can grow other conversations that help us with engagement.  We all can help each other if just given a chance.  Relationships provide us with friends that tend to support us during the good and bad.  Relationships strengthen our lives.  

3.   Relax before you react

Try to understand your own emotions by staying calm and poised.  Try to keep yourself from being stiff around me: give me eye contact and smile.  It will help ease all the tension.  Provide positive reactions around emotions.  Breathe and believe I am a person, just like you.

4.   Refresh for positive outcomes

Make sure you are focused and hit your reset button to maintain a positive attitude.  Get rid of any baggage you may have from a negative experience that will impact your communication with a person with intellectual disabilities. Consistently show a warm spirit for care.  Keep yourself energized and refreshed to your work.

At the same time, people with intellectual disabilities have to be prepared to advocate for themselves in health care settings.  Here are some strategies that have worked for me.  The next time you are in a medical appointment, you should:  

1.            Speak Up

It is important to express yourself when things bother you.  As self-advocates, we speak out and up on things.  Remember we want to be a part of the conversation which helps people gain confidence and respect towards people with intellectual disabilities.  Let the person assisting you know that you will ask for their assistance if needed.   If you are unable to speak for yourself, know that the medical professional should ask you if it is okay to talk to the assistant on your behalf.

2.            Recognize the worker’s fear or anxiety

When it comes to a worker’s fear, try to engage with the medical professional to let them see that you are a real person by saying “hello” to them. Strike up a short conversation.  Even when you are not having a good day, let the worker know that you are not having a good day.      

3.            Support the worker!

Don’t forget to say “thank you.” For example, say, “Thank you for your help today.”  Or, “Thank you for helping me today!”  Also, “I hope you have a great day.”  And even better, “I really appreciate all you do.”  Whatever you say, make it encouraging.

Everyone deserves to be treated the same during medical visits.  I challenge medical professionals to get to know people with intellectual disabilities by speaking with self-advocates and visiting service providers to gain firsthand knowledge.  I would like to have medical schools also make this an education requirement.  Recently, I learned that Harvard Medical School has a curriculum for medical professionals about disability bias.  I suggest higher educational institutes take time to reference this curriculum.  At the end of the day, medical professionals must be taught to believe in what people with intellectual disabilities are capable of.  They need to see people with intellectual disabilities like me for what we are: people.