I first met fellow writer Carly Okyle several years ago on Facebook. She interviewed me about life with a disability for her blog The D Card, which she started as part of a class assignment during graduate school. Now an editorial assistant for Entrepreneur.com, she spends her days writing and exploring life in the Big Apple. Today, I got to turn the tables and ask her the questions. Her words, of course, were inspiring, honest and real…

Can you tell me a bit about yourself and your disability?
I’m a journalist that lives in Manhattan. I’m a pescatarian, a sports fan and an avid reader who loves to make people laugh with a cheesy joke whenever possible. I also have mild cerebral palsy, which affects my balance. I walk with a limp and have some perceptual difficulties, but none of this hinders my love of traveling.

What’s been the most challenging thing regarding your disability?
I was raised to believe that I could do anything I wanted to do. It has been challenging, at times, to recognize that this might not always be the case (my perception issues make driving difficult, and I can’t balance on a bicycle or a horse, for example). Still, I’d rather try to do something and fail at it in spectacular fashion than assume that something wasn’t a possibility before I even made an attempt. In that spirit, I’m still trying to convince a friend to take me ice skating during the winter. Nobody’s caved in to my request yet, but I have a lifetime of winters left to make my case.

Most people don’t think about the ‘positive’ side of a disability…are there any for you?
Having a disability is, in a way, the ultimate litmus test. It can bring out the best in people or the worst. You find out who you can count on and who genuinely loves you — especially on the days when it can be hard to love yourself.

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?
I think that the biggest struggle is people’s attitudes and assumptions. In many ways, attitudes have improved (see the next question), but people still use the R word, still stare in public and still assume that people with disabilities can’t run businesses or don’t want to fall in love and have families.

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?
Historically, physically and mentally disabled people were forcibly sterilized and put away in institutions rather than interacting with the community at large. As a society, we’ve come a long way since then. Though I wasn’t born at the time, I would guess that many of those practices were derived from fear of what people didn’t understand. As we learn more about various disabilities and develop new therapy techniques and medicines, we understand more about how the brain and body work. Also, as more people with disabilities are portrayed in mainstream media as a part of society, we learn to see the person behind the diagnosis. Education and popular culture are making disabilities less unknowable, and therefore less frightening. Policies can now be formed based out of compassion and assistance instead of fright and panic.

Are there any misconceptions that still get under your skin?
People generally portray people with disabilities as either angry and bitter or as a shining beacon of inspiration and saintliness. I’ve found that people with disabilities are just that — people. Some are angry people, some are inspiring people (people can also be both of those things at once on any given day) and most are people who are just living their lives — enjoying ice cream, laughing with friends, stressed about work, procrastinating the errands they don’t want to run in favor of just one more episode on Netflix. Just let people be people rather than archetypes.

If you could tell the world one thing in honor of the ADA’s 25th birthday, what would it be?
It sounds naive, but really…treat people as you would want to be treated. Pre-schoolers understand that concept, so I’m not exactly sure when that idea gets lost, but if I could offer any advice, I guess that’d be it.

I was immediately inspired when I discovered the Disability Visibility Project, a community partnership with StoryCorps aimed at collecting and preserving the stories of people with disabilities. Founder Alice Wong, Staff Research Associate at the Department of Social and Behavioral Sciences at UCSF, began the project in July 2014. Here, she talks about the project’s lasting impact and what she sees as the biggest barrier in society right now with regard to the disability community…

Can you tell me a bit about yourself and how the DVP came about?
I live and work in San Francisco as a researcher at the Community Living Policy Center and I’m an active member of the SF Bay Area disability community. I’ve always enjoyed listening to StoryCorps stories every Friday on NPR’s Morning Edition. I attended a live event at StoryCorps in San Francisco about two years ago and I learned about their community partnerships with various organizations and that sparked the idea of one that’s specifically aimed at people with disabilities.

Why is this project so important, not just for the disability community, but for society as a whole?
There aren’t enough stories and history about people with disabilities in their own words and on their own terms. With the legacy of institutionalization and rampant discrimination, people with disabilities have been integrated into American society for less than 50 years if you think about it. Also, media and news about people with disabilities is usually through the non-disabled person’s perspective and that can create stereotypes and cliches about what life is really like. We’re not angels and inspirations nor are we monsters and parasites.

What can the able-bodied community learn and take away from the stories shared in the DVP?
We are the largest minority in the United States; there are approximately 57 million of us and we’re everywhere! Not everyone has a visible disability, but we are present in almost every aspect of community life.

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?
One barrier that’s really tough to combat is having low expectations. I experienced this first-hand as a kid with a disability. Kids know when adults look down on them and they can feel it when you don’t think they’re capable or as valuable as other kids. This barrier can’t be solved with a law, but in the way we think about disability, that it’s about doing things differently rather than being ‘less than.’

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?
I’d like to think that people are less surprised or shocked when the see a person with a disability out in public or in a position of power or prestige. There should be diverse views on who we are — we can be talented, jerks, millionaires, or slackers — just like everyone else. This culture change takes time and it happens as more people with disabilities are visible in their communities (and I don’t mean literally visible, I mean as an identity). Being ‘out‘ and open about being a person with a disability is the start to greater acceptance and understanding by non-disabled people.

If you could tell the world one thing in honor of the ADA’s 25th birthday, what would it be?
Easy! Use the new StoryCorps app and record a story for the Disability Visibility Project or go in person to a StoryCorps booth! Our project will end December 2015 and there is still time to be part of our archive. Anyone with a disability is encouraged to record a conversation alone or with a friend and there are no guidelines on what to talk about as long as it’s about the lived experience of disability.

–Alice recently wrote about the importance of storytelling. You can also follow the Disability Visibility Project on Facebook and Twitter! Thanks so much, Alice!!

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]