I’m 27 years old. I have both an intellectual disability and anxiety. Since childhood, I have had complex medical issues and have seen many specialists — I still do.
People say I’m really funny, outgoing and positive. I’m also hyperactive — I can never stay in one place. It’s hard to contain all this. Trust me, my mother and sister and father have tried. But I’m also all about advocacy and giving voice to people with special needs.
People with special needs, we need health care, right? But often, doctors don’t consider or address disability or special needs in their clinics. What I tell health care people is to take the time get to know us, as it’s hard for us to express ourselves sometimes. Know that we often get discriminated against. The key word is patience. You might have to repeat things, twice, maybe 3 times, and use simple words. You may need to make accommodations, allow a caregiver in or change the way you communicate to provide care.
Please recognize that people with disability also have a lot of ability.
I am lucky to have my mother come with me to all my appointments and programs. She is so important to me. She has taught me the value of being positive and not giving up on myself. She never gave up on me. So, I’m never going to give up trying to make her smile. My pediatrician has also been with me from the beginning. She and my mother worked together to help me know my normal and to be myself. Having a good relationship with my doctor means the world to me. It makes me feel safe.
I partnered with the Centre for Addiction and Mental Health to create a tool to bridge the gap between patient and doctor — it involves filling out a form indicating your medical needs before you go to a doctor. To be honest, I can’t remember half my medications myself. Patients can also indicate how they are feeling and how they prefer to be treated.
Please recognize that people with disability also have a lot of ability. Celebrate our accomplishments rather than put us down or discriminate against us. Life is not always about the “big wins.” I’m proud of the little victories I accomplish each and every day.