By Maclaen R. Burningham
Polson, Montana
Author Maclaen R. Burningham lives in Polson, Montana, with his roommate, Heather the cat. He is a self advocate and has served on the Rural Institute’s Consumer Advisory Council for 12 years.
Why Talking About Our Needs Matters
I once heard another person with a disability say, “It is hard. I do not want others to know I am struggling. I just keep to myself.”
I understand that feeling, but I also know that keeping things inside makes life harder. Talking openly about your needs can help you feel better and find support. When you share what you are going through and work with others to solve problems, you give yourself a better chance to succeed.
Being honest can still make me nervous or scared, but it helps in the long run. Every time I speak up, I take a step toward feeling stronger and more independent.
Fear of Being Judged
Some people stay quiet because they worry others might make fun of them or treat them differently. That can happen, but it is not a reason to stop trying. There will always be people who struggle to understand. Talking and explaining helps people learn, and often leads to more support.
Sometimes, when you open up, the other person ends up sharing what they are struggling with too. Understanding goes both ways.
Living with Prader-Willi Syndrome
I have Prader-Willi Syndrome. It means I face a serious health risk if I overeat or take in too many calories. I do not have the ability to control my constant urge to eat, which can put my life in danger.
Because of that, it is important for me to tell others about my disability. When people know, they can support me and help keep me safe. When I was younger, I tried to hide it. That only led to me becoming overweight and unhealthy, and it affected both my physical and mental health. It affected the people who love me.
Talking openly is what changed everything for me.
Mistakes, Learning, and Moving Ahead
Everyone makes mistakes. I have not always done what I need to stay healthy. When I focus too much on those mistakes, it makes me sad and stressed. I start wanting to hide again.
But when I tell myself that the mistake is “history,” then I can move forward. It is in the past. I can walk ahead more clearly. If you try to walk forward while looking backward, you will fall.
Looking ahead is what gives you freedom.
Success Comes from Doing What You Can
You do not have to be perfect. You only need to do the best you can and follow your plan. When you take care of yourself, you feel better and find more success. Thinking good thoughts and moving forward helps you feel free.
There is also freedom in sharing your needs with people who care about you. When they know what you need, they can be part of your team. And you can be part of theirs.
Why Starting the Conversation Helps Everyone
Sometimes people do not know how to approach someone with a disability. They are not sure what to say or what a disability includes. They might speak too loudly or too slowly, as if the person cannot hear or understand. Many older adults experience this too.
When the person with a disability starts the conversation, it helps everyone relax. Being open and honest makes it easier for the other person to respond comfortably. You may even find out that they are struggling with something too.
We are all in this together.
This story appears as part of Montana Voices Amplified, a statewide storytelling project that uplifts the lived experiences, insights, and advocacy of Montanans with disabilities and their families. The series is hosted by the Montana Family to Family Health Information Center, a program of the Rural Institute for Inclusive Communities at the University of Montana.
Montana Voices Amplified welcomes submissions of five-minute videos or 600-700-word essays on any topic related to your lived experience as a person with a disability or caring for someone with a disability.
Authors of chosen submissions receive $100. Videos will be posted on the MT F2F website and shared on social media. Essays will be posted on the website and ScholarWorks, shared on social media, and printed in a professionally designed publication to distribute to families, schools, agencies, and legislators as appropriate.
Amplify YOUR voice!
Send your idea for an article or brief video to molly.haniszewski@mso.umt.edu
