I’m so happy to welcome Meghan as our first interview for Americans With Disabilities Act Week. Meghan is in her early twenties and blogs about lifestyle and music on her blog Got Meghan. I’ll just let her amazing words do the talking. Take it away, Meghan! xoxo
Can you tell me a bit about yourself and your disability?
I am in my early twenties. I’m a lifestyle and music blogger. I have a condition called Arthrogryposis, I was born with it. It was a joint disease that basically makes my arms and legs smaller and almost unusable. I can bend my knees a little but not as much as I’d like. I can’t walk on my feet because I have a club foot and rocker bottom. I’ve tried using walkers in the past but nothing has ever worked for me. So I’ve always had to use wheelchairs. I got my first electric wheelchair at the age of four. I can’t use my fingers, so I use my feet for everything. I’ve learned how to write, draw and text over the years. I also have scoliosis, which is another thing I got at birth! In 2002, I had three surgeries to fix my spine. I had the spinal fusion surgery; I have titanium rods and pins placed into my back and hips.
What’s been the most challenging thing regarding your disability?
The most challenging thing about my disabilities is that when I want to do something, I have to ask somebody to help me do it. When I do things like grab things off the floor while I am sitting in anything, I have people all around who want to lend a hand. I see their good intentions, but I’m a very independent person and what nobody seems to understand is that it hurts to ask for somebody to put you in your wheelchair or take you out somewhere. I’m very grateful for the ones that help me do these things, but I always tend to feel like a burden to my family and friends.
Most people don’t think about the ‘positive’ side of a disability…are there any for you?
I think if you are able to find ways to do things for yourself without having to rely on others, that can be one of the biggest positives a person with a disability can have! Thinking about the positives with having a disability can be a little tricky when you’re constantly seeing the negative popping up. I have to remind myself probably once a day that my body may feel older than it should, but I can still scoot on the floor, I can still grab and lift things. I’m not confided to my bed like some are, so I should look at that as a positive because that could’ve been my life instead!
The ADA is all about breaking down barriers for the disability community. What do you see as the biggest barrier in society right now? How have you personally experienced this in your own life?
A lot of people I’ve seen have been more concerned about having people with disabilities on TV, movies and modelling in magazines but I see things differently. I see problems still in my hometown and around the whole country, really. I live on a block that doesn’t have any sidewalks; the one that’s over by a house nearby has been broken up by the ground. It’s not straight and has grasses growing over it in parts. I love going on walks, but this basically makes it impossible to go “walking” and I have to trust the cars coming and going on the roads and hope they haven’t had any alcohol in their systems that afternoon and won’t run me off the road and injure/kill the both of us! I hardly see completed blocks of houses with sidewalks. I know there are other places like this — every block should have wide, finished sidewalks for everybody to walk on.
As far as the second question, I have had personal experiences with barriers. When I was in high school, during my Junior year, I was involved with National Honor Society and we had our meetings in the mornings before school started. We had these giant doors that blocked some of the rooms to get into these classrooms, I always had to bring my sister along with me to open these doors for me. There were two of us in wheelchairs that went to these meetings, so both of us had to endure the struggles of wondering if the doors would be open for us or not because sometimes they would be! Our aides couldn’t be with us because it happened before school was in session. Speaking of our aides, since there were four of us, we would have to wait for them to open the doors or have another student to do it for us during our breaks. So after a while I started having these dreams about fixing the problem. I actually talked it over with my principal by myself during my study hall once. I suggested about having buttons and door openers on these doors. She said she would look in it. I never heard anything back from her about it and whenever I saw her I asked about it. After a while, my dad took over and managed to get a meeting with the superintendent and the rest of the school board members. I went with him that night. Plans were set and I felt so much happiness that night. At the end of it all, construction of fixing the doors in both middle and high schools started in January of 2009. We got our buttons to place on our wheelchairs in March and I used mine a lot between those last two years of high school.
In what ways do you think society’s attitude toward the disability community has changed in recent years? Why do you think it’s changed?
If you look back at certain time periods, people with disabilities belonged in institutions and were there for maybe all their lives or half their life. Families were too embarrassed to have their children seen out in public. They looked to us as a curse instead of a blessing. Now, even though, there are a lot of people in this world that are still giving their disabled children up to adoption agencies and hospitals, society isn’t as scared of us as they once did! Some understand that we are still human beings, we want to travel the world and shop at the same stores as everybody else. The only difference is in our physical and/or mental disabilities.
Are there any misconceptions that still get under your skin?
Being an inspiration. It’s not something that I wanted to go after when I was born — nobody does! I don’t use my feet to get attention; I use to as a kid! Now I don’t and it’s held me back from a lot of things because I’ve felt ashamed from learning how to do anything new with my toes! I did NOT learn to do anything to impress anybody; I am just showing other people/kids with disabilities that they can be independent if they’re willing to work for it.
Another misconception is that people think it’s less rude to stare, point, whisper to one another than just come up to me and asking questions about my disability. I don’t mind the questions at all. I love it when little kids come up to me and say “Why are your hands like that?” or “How come you are in a wheelchair?” They are so curious and want to learn. I feel like I have to answer quick before their parent(s) hear and pull them away. It shouldn’t be that way! That child was being more respectful than the person who hushed them.
If you could tell the world one thing in honor of the ADA’s 25th birthday, what would it be?
The only words that I can say is “thank you” because without this act, I don’t think America would want to be dealing with this battle right now!
[Bottom photo via We Heart It]