H-CARDD Conversations: Patient Voices
We sat down with Andrew Garcia, a self advocate and partner at the Coffee Shed at Surrey Place Centre. We discussed why it is important to include the voices of people with developmental disabilities when talking about health care and how they can play an active role in education for health care providers. You've probably seen Andrew featured in some of our health care advocacy work, including our "Get to Know Me" poster campaign and videos for people with developmental disabilities. In addition to his involvement in H-CARDD health care advocacy efforts, Andrew has also worked with clinicians to educate medical students on best practices when caring for patients with developmental disabilities.
How did you get involved with this kind of work?
Well first Dr. Alvin approached me and asked me if I’d like to assist him like, speak to some of his students with some of the partners at the [Coffee] shed about healthcare and disability and the healthcare we need to his students.
H-CARDD: What made you want to get involved with that kind of work?
What made me want to get involved is it’s really important for doctors to know the needs of people with disabilities because if they don’t know to treat us, one day they might get a patient with a disability and they won’t really understand their needs.
Why do you think it is important to include the voices of people with disabilities when we talk about health and health care – like going to the doctor or hospital?
Well because our parents won’t last forever and if the doctors only speak to our parents we won’t really know what’s going on. Plus the people with disabilities are more likely to know what our problems are than our parents.
H-CARDD: What kind of power do you think that your voice as someone with a disability can have when telling people like doctors or medical students about what you need in your health care or services?
If they ask someone else without a disability, they won’t really understand while asking somebody with a disability we lived [the experience] and we understand everything that we need and we understand how doctors should handle people with disability as well.
What advice would you give to someone with a disability if they are anxious or unsure about going to the doctor or say, getting a needle?
It’s really important to go see the doctor because if they don’t go see the doctor, the problems might get worse and then it might lead to something really bad in the future. If they don’t deal with it now. I’d just tell them that the doctor is here to help you and make you feel better and the needle will only hurt for a few minutes.
What would you tell students who are learning how to become doctors or nurses about people with developmental disabilities?
When dealing with a patient with a disability, it takes a lot more patience to deal with us because sometimes like we won’t really understand what the doctor is telling us, so they can’t really speak to us like they would somebody else. And also treat the patient with disability like their own person, you know don’t talk with just the parent or the caregiver because again, the person with disability would fully understand what they need, rather than a parent or a guardian that doesn't really understand what’s going on. It’s always good to treat the person with a disability calmly, gentle, and nice.
H-CARDD: Why do you think that important, especially for people who have disabilities?
Well if they deal with like anxiety, if they are really like hard and rough with a person with a disability, it might activate their anxiety and then they may make matters worse. [Even loud noises] - it might not be loud to other people, but it’s really loud to somebody with Autism.
How has getting involved in this work about health and teaching about health and disability changed how you feel when you have to go to the doctor or hospital?
I really think I’m making a difference and helping future doctors become better at their job when handling someone with a disability because I’m giving people with a disability a voice and letting the doctors know that people with a disability are people just as much as they are as well. The doctor doesn’t really scare me because when I was little, I had a surgery so now that I’m older I’m thinking what’s the worst that they can do to me?
Any other comments on this work?
I wanted to add it’s not really hard to take care of a person with a disability, it just takes some more time and a lot more patience.
Learn more about Andrew and his involvement with our program.