Karin at the Philadelphia Magic Gardens.

I Have a Disability, and I'm Not Ashamed

598
598

I recently watched a video by filmmaker and self-styled inspirational speaker Joey Papa offering “advice” on how to connect with someone with a disability or whose loved one has a disability. It was among the most offensive, ableist videos about disability I’ve ever seen, even though — or perhaps because — it was apparently made with good intentions.

Video by Joey Papa. Transcript available here.

Papa suggests that to understand what having a disability feels like, people should think of the “most shameful, embarrassing thing about who you are” and imagine it showing on a video screen in a public place with hundreds of people watching. This, he says, is how people with disabilities and parents of children with disabilities feel. He goes on to claim, “One of the most shameful, embarrassing things about who they are is a part of their physical body. Think about that. They are wearing that on them. That is a part of their physical makeup.” And he says viewers should respond to people with disabilities as they’d want to be treated if their shameful secrets were on display.

No. Just no.

Disability is not shameful. Why should I feel ashamed of my body just because it works differently? Disability is a natural part of the human experience. We will all have disabilities if we live long enough. Disability can happen to anyone at any time, and it’s not a reason to stop living. We do not have “special needs” either — we have the same needs as all human beings. We just live in a society that doesn’t equally value different bodies and ways of moving, sensing, and thinking. Instead of including us and embracing our diverse perspectives, society labels our needs as “special” and therefore inconvenient. When you’re inconveniencing someone, how do you tend to feel? Embarrassed. Ashamed.

When I was diagnosed with cerebral palsy as an infant, doctors told my parents I would never walk, speak, or live independently. They said my parents should just put me in an institution and “move on with their lives.” Thankfully my parents didn’t believe that. They knew having a daughter with a disability wasn’t shameful. I wasn’t a secret to be locked away and forgotten. I was a human being with potential.

My parents devoted their lives to helping me succeed and raised me to be a strong woman who believes in myself. Today I have a Master’s degree and a job I enjoy at The Mighty. I live in my own home and travel around the United States sharing my experiences on my blog. I give presentations to companies, schools, and organizations about the importance of including people with disabilities. My disability is not something I’m ashamed to put up on a video screen — I’ve appeared on the news several times, and I make YouTube videos about my travels, my wheelchair splashed across the screen in all its maroon and silver glory.

My disability has not kept me from living a fulfilling life. But do you know what has gotten in the way? People who think disability is shameful. People who are afraid to get to know me or date me because they have bought into society’s beauty standards and think disabled bodies are unattractive. Employers who look at me, make assumptions about my abilities, and don’t hire me. Store owners who don’t bother to make businesses wheelchair accessible because they see accommodating people like me as a waste of money. A system that doesn’t give people with disabilities equal access to health care and home care services, but then shames us for needing government assistance.

At times, all these things have come together to make me feel sadness and shame about something I should never have to feel ashamed about — being myself. It has taken me years to overcome these feelings, and I still struggle sometimes. But I know I should not be ashamed. I am a human being, and I have value. I’m not a religious person, but I do believe I was put on this Earth for a reason. I don’t know if it comes from God or within myself or both, but I have a purpose and it’s to help people see the opposite of what people like Joey Papa seem to think disability represents.

Nothing about me or any other person with a disability is a mistake. Our bodies are not shameful. We are human beings with personality quirks and flaws like everyone else, but our disabilities don’t make us lesser. We all have something of value to give to the world, if the world recognizes our value and gives us a chance.

Joey Papa, please take down your hurtful video and use your voice to fight stigma about disabilities, not add to it. Get to know real people with disabilities and share our experiences with your social media followers who may have heard your damaging words. Most of us do not want to be objects of inspiration or pity, but we do want to be recognized for our humanity and treated with respect. Let’s help parents and newly disabled people see there is hope and strength to be found on the disability journey, not shame.

My name is Karin, and I’m #DisabledAndUnashamed — how about you?

Follow this journey on Free Wheelin’.

598
598

RELATED VIDEOS

JOIN THE CONVERSATION

Why I'm Never 'Sitting Alone' as a Person With a Disability

52
52

I was seated at a circular table in a banquet hall — clad in a dress and a pair of heels, resting my throbbing leg.  My gaze was transfixed behind me, on the throng of partygoers darting around the room, eagerly snapping pictures, clamoring for the best shot of the guest of honor and calling out instructions to various family members. As I waited to be called up for a picture with the guest of honor, my own eagerness manifested not in my movements, but in my twinkling eyes, my smile and my laugh.

I glanced back at the table — the immaculately-placed floral centerpiece, the cups of nuts and candies adorning each place setting, the smattering of soda cans and pale pink cloth napkins strewn across the off-white tablecloth.

Suddenly, my eyes fell on the seven empty chairs surrounding me. In that moment, it occurred to me that an outsider’s perception of the situation would likely be flawed. A stranger would see a slightly aloof, able-bodied young woman sitting alone, and a large family excitedly preoccupied with taking the perfect picture, not a tired, physically disabled young woman with a family who not only understands and respects her, but also never questions her need to rest.

It was then that a stark realization struck me: In appearance, I was sitting alone, but as a person with a disability, I am never sitting alone.

I am the only person with a physical disability in my family, but I have been blessed with a family that takes the time to understand and respond to my physical limitations. My family does not sweep my disability under the rug, denying its existence. They do not insist on weaving my disability into every conversation, relating it to anything I cannot do well. My family has developed a firm “middle ground” — acknowledging my disability in a subtle, unobtrusive manner, then helping me if assistance is warranted.

This particular instance was no exception. My family’s perceived indifference not only demonstrated an understanding of my needs, but it also illustrated the utmost respect for my personhood. By proceeding with their vigorous photography and allowing me to rest in the interim, my family quietly acknowledged my disability without allowing it to consume my identity and impede the celebration at hand.

My eyes wandered to the neighboring tables. A few guests, all at least 50 years my senior, sat scattered around the room, quietly chatting among themselves. I felt a strange sense of kinship with them; in that moment, my body felt far older than its 21 years of age, and I, like many of them, could not expend any extra energy.

Upon scanning the room, I was immediately reminded of all of the writers and bloggers with cerebral palsy who have candidly expressed that their bodies feel far older than their chronological ages. I smiled, thankful for the connections I have forged with others in similar situations.  In that moment, I knew that so many others — in my town, in the nation, and throughout the world — would see the absurdity of the situation and laugh with me over the nuances of living with a disability. Prior to discovering the vast reach of the disability
community, I felt a profound sense of isolation, but in engaging with others in the disability community, I have found an unceasing sense of connection and belonging — a lifeline.

As a person with a disability, I am never sitting alone.

Living with a disability can often feel lonely and isolating.  It is easy to wonder if there is anyone in the world who can truly understand the distinct worldview it provides. However, by developing a strong support system of people who understand the disability experience and those who are willing to learn about the challenges people in the disability community face, I have come to believe none of us is ever sitting alone.  There is always someone sitting with us — listening to us, validating our experiences and working to understand our perspective.  Even when we appear to be sitting alone, there is invariably someone who is silently helping us, guiding us and providing us unconditional support and undying love.

I am never sitting alone.

You are never sitting alone.

We are never sitting alone.

We are all at this table together.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by maroznc.

52
52
JOIN THE CONVERSATION

To People Who Feel Sorry for People With Disabilities

95
95

Dear people who feel sorry for people with disabilities,

I have heard people say “Aww, I’m sorry.” But here is my question: why are you sorry? Do you assume because we are disabled we do not have a life that is as full as yours? Or because you think our lives are tough because we need help with things? Don’t get me wrong, as a disabled community we do have our struggles, whether that is accessibility, having the right things we need, etc. But at the end of the day, we are people. We have friends, jobs, we go to school and do so much more.

Let’s get real here. A parent hearing the word “disabled” changes all their hopes and dreams for a “perfect” child. Instead they may wonder: Will they have friends? Will they be picked on? Will they live a full, happy life? Let me answer this question. Yes, they can live happy lives. How do I know this? I am disabled. I have cerebral palsy and I am an amputee. I run and founded a small group in my area called Youth Changing the World with my friends. Last year I became a independent self-published author.

I think many people in society have a problem with the word disability. They are scared because they have a picture in their heads of someone who can’t do anything for him or herself. So they don’t even try to see what we are capable of, and limit us because they don’t know what to do or how to help us. For those of you who feel bad for us, or don’t quite get how we do the awesome things we are able to when given the chance, spend time with someone who is disabled. Help us — not necessarily with basic or everyday tasks, but with more accessibility. Give us jobs and support our right to be heard. We have just as much to say as everyone else if not more. So listen — you may learn something.

As a community we have to stand up and stand out and create and define our own lives, not let others do it for us. When we do, the world will see what the word “disabled” really means.

Sincerely,

A disabled woman who is limitless

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by Moisseyev.

95
95
JOIN THE CONVERSATION

4 Tips to Help Medically Complex Families

8
8

I’ve always had a lot of health issues. I had surgery on my stomach when I was about 7. I was hospitalized a lot of my 6th grade year. Then I was diagnosed with hashimotos in high school. When I look back on my childhood, my health is what stands out to me; memories of pain, specialists and medications. I thought since my childhood was hard, life would get easier. Unfortunately, most of my teens and early adult years were also spent battling my health, but I learned to accept this.

Then I got pregnant with my first child. It was a rough pregnancy, nothing like I imagined, but I survived it. Our son had no medical complications and I was relieved. But at 6 months old, my son started having tremors. At first we thought it was seizures, but his neurologist assured us it was “his way of processing.” There were also concerns he was delayed developmentally, so we started occupational and physical therapy. He is now almost 3 years old and in therapy 5 times a week with a diagnosis of autism.

This is only part of our story. I became pregnant with our daughter when our son was about 16 months old. We were beyond excited, conceiving her was not easy for us, maybe because of my hashimotos. I had another rough pregnancy, this one much worse then with my son. I had hyperemesis gravidium. I don’t like to talk about this because I feel as though others automatically assume this is what caused our children’s health issues. You see, at 24 weeks gestation, our daughter was diagnosed with hypoplastic left heart syndrome, a severe congenital heart defect. This was not due to the medication I took for hypermesis, I was not even prescribed medicine until later in my pregnancy when her heart was already formed.

Our daughter was born and we savored each moment with her, never knowing how many we would have. The expected course of open-heart surgery was not working, she needed a heart transplant. But a donor heart did not come in time. Our beautiful girl lived for 4 months and 9 days before leaving this earth and entering heaven. Our world was turned upside down and we have been through what no parent ever wants to go through.

Sometimes I look at our family and I feel shock. All I’ve ever wanted was to be a mommy and my children have had to go through so much. So so much. It’s  hard to see my children’s struggles. It’s also hard to navigate a world who glorifies wellness, health and perfection when your family seems to be the opposite of that.

So what do we do? How do we cope when we have a family with multiple members who deal with health issues? We learn to do what we need to do to survive and make it to the next day.

Here are a few tips for those with a medically complex family.

Throw people pleasing aside.

People have an idea of what life should look like and they may expect you to keep up with them. But when your family has high needs, it’s impossible. Learn that saying,”no” is not only OK but imperative. If others are not understanding, they are probably not people to have in your life anyways.

Do not set yourself up for failure.

I have learned this the hard way. My son cannot do grocery stores because of sensory overload. But I kept pushing it. One day I finally realized I was setting us up for failure. So now, I shop when daddy is home to stay with him. This is just one small example, but by not pushing your family, it can cut back on a lot of stress.

Accept your family’s life may look different from others.

This can be a tough realization. Other families may be worried about things that feel very minor compared to the issues your family is facing. It’s frustrating. But feeling envious all the time can be draining and emotional energy is too important to waste.

Surround yourself by people who get it. 

We have found families who face medical issues to be the ones who understand what we are going through. Connect with other families whether it’s through social media, support groups, therapy centers, etc. It helps to know that you are no alone.

Above all, give yourself (and your family) grace! Savor the good moments. As a mom who has lost my child, I am so thankful for each moment I had with my daughter, even though they were hectic days spent mostly in the hospital.

I hope you find some of these strategies helpful.

We want to hear your story. Become a Mighty contributor here.

Thinstock image by tatyana_tomsickova

8
8
JOIN THE CONVERSATION

When I Heard Why 'Share a Smile Becky' Was Discontinued

52
52

Don’t get me wrong, I’ll be the first to say that I feel some people draw out every unfair part of society and want an American Girl doll to be available with every single combination of conditions possible. I understand that is not feasible, and I get why.

On the other hand, Mattel made a Barbie back in 1997, “Share a Smile Becky” who happened to be in a wheelchair. I got this adorable Barbie mailed to me just last year by a role model and mentor of mine who happens to use a wheelchair and has her whole life. I found it extra-special because I suddenly became ill with postural orthostatic tachycardia syndrome in September 2015, and I now use a wheelchair on bad days and for certain events.

Becky wheelchair doll banner showing Share a Smile, School Photographer and Paralympic Becky.
Becky wheelchair dolls including Share a Smile, School Photographer and Paralympic Becky.

I think anyone who uses a wheelchair for even one day will be able to explain all of the inconveniences and issues they faced. As a society it seems that sometimes we think of making something accessible as an afterthought, if at all.

Back in 1997 it was pointed out that Share a Smile Becky couldn’t fit though the doorways in the Barbie Dreamhouse, and her wheelchair couldn’t fit in the elevator. At the time they said they would address it. Now, 20 years later, Becky still can’t fit through any of the doorways or elevator, so instead of fixing the problem, Mattel just decided to do away with Share a Smile Becky.

What kind of message does that send to those of us who use a wheelchair? It’s easier to get rid of the person with the disability than fix things to make it work.  No, I’m not hurt and I’m not offended. I’m just annoyed and frustrated. It seems this huge company has no problem making it clear that deleting the person with the “issue” is easier than including us.

Mattel, I’m sorry you chose to send this message, because little girls and boys everywhere deserve better than a parent having to explain to them why Barbie’s friend in a wheelchair isn’t around anymore.

Follow this journey at Smiles in the Trials.

We want to hear your story. Become a Mighty contributor here.

52
52
JOIN THE CONVERSATION

Standing for the 56 Million With Disabilities in the U.S. on 5-6

243
243

There’s a special day in the making on May 6, 2017. The Be Unstoppable Campaign, founded in the fall of 2015 is hosting a “Stand for the 56.” This is a social media event that anyone can participate in using special hashtags and utilizing a printable poster.

There are 56.7 million individuals in America alone living with a disability. They make up 20 percent of our population and would be considered the largest minority group in America (if formally recognized as a minority). While this is a large amount of American citizens, we still see a silencing of these individuals and lack of equality in many areas. May 6th is being declared a day to celebrate those with disabilities, showing the world that we stand for our 56.7.

The Be Unstoppable Campaign seeks to empower those with disabilities around the world, teaching them their disability is not their definition. The campaign features ambassadors with disabilities who each have their own message to share. The hope of the campaign is to reach millions around the world, changing the stigma related to those with disabilities, and challenging the inequality these individuals still face today. The campaign carries out their mission in a fun, positive tone, choosing to focus on what these individuals can do, instead of what they can’t.

To participate, post a photo on your twitter, Facebook, or Instagram account saying you stand for the 56.7 million Americans living with disabilities. Use hashtags #BeUnstoppable and #DisabilitynotDefinition and tag the @BeUnstoppableCampaign on Instagram to connect with others around the country. You can visit the campaign website at www.beunstoppablecampaign.weebly.com to download a printable poster with the message, and learn more about how the Be Unstoppable Campaign is empowering millions with disabilities.

Stand for the 56 on 5.6

We want to hear your story. Become a Mighty contributor here.

243
243
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.