How Society's Focus on 'Curing' Disability Can Harm Disabled People

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There’s something I feel needs clarifying between many abled and disabled people. There is a major problem with society thinking disabled people’s greatest, most pressing need is to be cured. It’s difficult to explain and I hope I can find the right words to help people understand and to help disabled people be heard.

When people believe disabled people’s main concern should be looking for a cure, it can lead to an inordinate amount of emphasis on a person’s physical body, or on their mind when it comes to mental illness or intellectual disabilities. This can lead to disabled people being treated as flawed and even subhuman. Focusing on cure emphasizes the person’s physical being and overshadows them being viewed as a whole person.

If a cure is considered to be what a disabled person should desire most, it seems to go along with the idea that disabled people are broken and need to be put back together. We are seen as less than, almost as if we’re bad people. Yes, I have physical inabilities, but that does not make me lesser or a “bad” person somehow.

That’s one of the biggest issues: not only is there an extreme focus on our physical forms or our mental capabilities, but a variation from the supposed norm is considered negative and unwanted. Because the world often sees the physical or mental disability as the entirety of the person, the negativity people associate with disability can become associated with the person. This is incredibly hurtful and unfair. This kind of thinking needs to be eradicated — quickly.

The emotional and social aspects of being a disabled person are constantly getting overshadowed by their disability. We are still people! We have lives outside of attending to our disabilities. Of course, disabilities can create an actual needed increased focus on the physical or mental. But that doesn’t give the world permission to objectify us.

We still laugh, we cry, we love — we don’t suddenly stop living and experiencing things when we are born with a disability or become disabled. And we often do all of this while fighting the medical system, fighting ableism, fighting for accessibility and accommodations, even fighting for our lives! We’re kinda badass, if you didn’t already know.

This obsession with a cure also harms disabled people by affecting our daily quality of life. Not only are we often not treated with respect, but we still struggle with seriously basic accessibility issues that should not exist in the year 2017! We are not given accommodations we need; we are instead told to “be more positive,” to “not accept our limitations” and “fight for a cure!” These are things I’ve been told. In real life. By serious people. Yeah. The focus needs to be shifted. Of course I’m not suggesting we stop looking to cure diseases, just that we pay more attention and give more resources to the daily needs of disabled people.

Even if there were a cure for any given disability, I know there are disabled people who would choose not to be cured. And that is their choice to make, no one else’s. Personally, I wish to get rid of the physical pain my disabilities cause me, but I can see why some people with disabilities would not want to change part of themselves.

Our disabilities have helped shape who we are today and are part of our identity. A part of our identity, not the entire thing. Because we’re still people — people with fulfilling lives lived with our disabilities, not fighting against them. We’re people with kick-ass lives who deserve respect and kindness like everyone else, and we’re deserving of that whether a cure is ever found or not.

I think people can mean well and actually believe they are helping disabled people when they say all we need is a cure. I can understand to some degree why people who have no idea what our daily realities are like, who see us trying to navigate in an extremely inaccessible and unaccepting world would think a cure may be the answer. I kind of get it. But once their eyes are opened to our lives and our existence, this view should quickly change, right? You’d think?

I want to try to be understanding, but it’s hard at times. How would they feel if they were in our shoes? It feels like some people believe there’s something wrong about our existence. It feels like being told “You need changing to have the right to live in our world.” I suppose that’s what it all comes down to.

I try very hard to look at it from others’ point of view, but it feels very much like those who focus on cure don’t care about our daily quality of life. They just want us “fixed.” But I don’t believe that’s the most urgent need the average disabled person has, especially because in most cases a cure seems rather far off. I’m not aware of a disability close to being cured, or to having that cure made widely available anytime soon. There will be many more days disabled people have to battle with accessibility issues and ableism before a cure would be an option, should they even want it.

The way the world addresses disability needs some serious reform. Hopefully we can all get on the same page and begin to work together to make the world accessible and accepting.

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Thinkstock photo by Bubutu.

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18 Messages of Hope From People With Disabilities Who've Struggled With Suicidal Thoughts

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As people with disabilities, we can struggle with pain, fatigue and other physically and mentally stressful aspects of our conditions. We also live in a world that often misunderstands us, devalues us and does not prioritize the things we need to live successful, happy lives — such as supportive, affordable health care, accessible buildings, welcoming employers and so much more. So it’s unfortunate, but not surprising, that studies show people with disabilities are up to four times more likely to attempt suicide, and people with chronic illnesses are at higher risk as well.

But when someone with a disability dies by suicide, the narrative tends to be change. It’s sometimes regarded as understandable rather than as a tragedy because “who would want to live like that?” People whose disabilities aren’t imminently terminal have even been allowed to die by assisted suicide, or to withdraw their life support because of perceived suffering that could have been alleviated through better medical care and services such as in-home personal assistants and accessible transportation. Society often promotes the idea of life with a disability as not worth living, instead of recognizing that people with disabilities can live rich, full lives like anyone else.

To survive and thrive with a disability, we need support from people who understand, who’ve been there and who can affirm our lives as equal and worth living. So we asked our Mighty community: If you’re an adult with a disability and have experienced suicidal thoughts, what’s one message you would give to other disabled folks who are struggling?

Here’s what they had to say:

1. “Stay strong, it will get better. Six months ago, I was in a dark place, not thinking I’d ever move out of my parents’ house or anything. I just got accepted to my dream university in a different state and I’m moving in January! I got a hearing date for my SSI, and I couldn’t be happier! It gets better!” — Mickey R.

2. “Your disability does not define you.” — Molly C.

3. “Find someone you can trust to talk about things with.” –Susan S.

4. “It’s hard. It’s so tough. Most of the world won’t understand what you’re going through, but you’ll find someone to hold your hand and help you through it. Reach out and you’ll find them.” — Blythe V.

5. “There is more to life than work. Our society puts so much pressure on us to have a job and treats us like we are lazy and worthless if we don’t. But the truth is that we are valuable even if we don’t work… If you wouldn’t tell someone else in your position that they are worthless and a burden, don’t tell it to yourself.” — Caroline M.

6. “The darkest hours are just before a perfect sunrise. My motto.” — Diane B.

7. “I was picked on as a child and called the R word until one time I decided to try to hurt myself. My parents got me help right away and the therapists told me that no matter what, I was special and unique. It took me months to years to begin to like myself, but my family and my small number of friends helped me along the way. You’re here for a reason; don’t give up. Yes, there are bad days, yes people will judge you, but remember you were meant to be the person you are today. So don’t give up, there are good people out there.” — Tiffany S.

8. “Don’t be afraid or ashamed to seek professional help.” — Cassie K.

9. “We do things at our own pace. It’s not a race, we can do it in our own time. If it takes someone only four years to graduate university, that’s great, and you should be happy they’re moving on in their life. If you realize you have your own stuff to work on, making sure you’re mentally healthy, and it takes a little longer to graduate, then that’s good too. You recognized it’s OK to get a little extra help and to take a little extra time. You’re still going to make it.” — Mia C.

10. “Just hang on, this will pass. I know we hear that all the time from people who can’t possibly understand but take it from me, someone who has definitely been there, it will pass as long as you don’t give up. It’s not going to be easy — in fact it feels damn near impossible — but it will pass. — Kristen B.

11. “Always believe yourself. Even if the most important people don’t. It sucks to constantly feel the need to prove yourself. But you’ll never win. Just trust yourself, believe yourself and take care of yourself. ‘Cuz in the end the only thing that matters is the way you treat yourself. Please be kind; having disabilities is already hard enough. Try not to judge yourself. — Lotte S.

12. “You are still worthy of life, of having a life, you just have to figure out a new way to live it. Set new goals. Dream a new dream.” — Steve R.

13. “I am not my disorder. It gets better, then worse, then better. But the feeling passes. Pain is inevitable, suffering is optional. Fight, fight, fight. Your life is important. — Alexa A.

14. “Don’t let the thoughts win. They’re not you. You are so much stronger than you give yourself credit for. Even if you don’t realize it. — Alicia M.

15. “It will get better. Even when it feels like it never could… All of a sudden it does, it gets better. Even if it’s just a case of adjusting to your new normal. I had a close friend walk away from me when I was feeling like this — if the same happens to you, know that you deserve better. No one can or should judge you if they haven’t walked in your shoes. Particularly not loved ones.” — Lara C.

16. “As someone with borderline personality disorder… I know the post meant for me to be all positive and uplifting, however I’m speaking from the heart. The first thing you need to do is accept your disability for what it is. I’ve come to terms with mine. The next thing you need to do is realize everyone’s disability is different and just because you’re not ‘better’ after say a month or even a year doesn’t mean you aren’t making progress. And the last thing I want to say is… there really are so many people out there dealing with what you’re going through. So if you find someone who has some of the same problems, it can really help. — Lisa F.

17. “Life is temporary. The bad times won’t last forever. Do the best you can each day… not what others want from you, not what you think others want from you…just your personal best. It’s OK to not be well/perfect/productive. Some days are just going to be harder than others.” — Robyn M.

18. “Hang on. You are worth more than you know. You are capable of more than you realize. To quote a line from my favorite movie [‘The Imitation Game’]… ‘Sometimes it’s the people no one imagines anything of who do the things that no one can imagine.'” — Lisa L.

For more messages of support and understanding from people with disabilities, check out The LiveOn Movement.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “HOME” to 741-741. Head here for a list of crisis centers around the world.

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

Thinkstock photo by Moissey EV.

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Bryan Cranston Plays Disabled Character in 'The Upside'

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Bryan Cranston is the latest able-bodied actor in Hollywood to play a disabled character. “The Upside,” which premiered at the Toronto Film Festival on Friday, stars Cranston as a wealthy quadriplegic man who hires a man with a criminal record (Kevin Hart) to take care of him. The film is based on the 2011 French film “The Intouchables,” which also stars an able-bodied actor in the role of a disabled man.

At the film’s screening, director Neil Burger told the Press Association in Toronto:

It is a really interesting question, does an able-bodied actor have the right to play a person with a disability? And there’s arguments on both sides of it.

All I know is that we did an incredible amount of research and went at it with as much respect and honesty that we could – and certainly Bryan Cranston did – and our goal is to shed light and be compassionate and be respectful to those communities.

“The Upside” is at least the third film this year to star an able-bodied actor in a disabled role. In July, Alec Baldwin starred as a blind man in the film “Blind,” and in October, Andrew Garfield will play disability advocate Robin Cavendish in “Breathe.”

Lack of casting diversity is repeatedly a problem in Hollywood. According to a report published by The Ruderman Family Foundation in 2016, nearly 20 percent of the country’s population lives with a disability and yet 95 percent of characters with disabilities are played by able-bodied actors.

“While we don’t know the auditioning history of ‘The Upside,’ casting a non-disabled actor to play a character with a disability is highly problematic and deprives performers with disabilities the chance to work and gain exposure,” Jay Ruderman, president of the Ruderman Family Foundation told the Press Association.

Header image via IMDB.

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How Parents Can Help Children Understand Disability

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How can I help parents explain my disease to their children?

This is kind of a tricky question, because as human beings we’re often fearful of things we don’t understand. Even more as a parent, how do you explain something you yourself know nothing about to your child? Your explanation may change their view on the world and even how they experience life as an adult.

Most of the time I’ve seen one of these four reactions to my wheelchair… One, someone will make eye contact with me and then swiftly​ turn their head away. Two, the too​-big smile and stare. Three, the stop in their tracks and furrowed brow. The fourth, the reaction of children is personally my favorite. Babies are the best; they just smile, no questions asked, no explanation needed. A small child is still innocent, curious as to why I’m in a wheelchair or may never have seen one. I can’t tell you how many times I’ve heard “Mommy, what’s that?” or “Why’s she in that?” You’ve never seen a parent get out of an aisle so quickly. I understand, though; they don’t know what my reaction will be. Will I be offended? Or be nice about it and give a simple explanation? Or will I be outraged at the very question? Maybe they’re just embarrassed that their child is even asking such a question. Mostly I think they are unconsciously protecting their child. I’m a parent too; I get it.

Remember, our children take cues from us. So if we are nervous or rigid about something, our children​ will also be apprehensive about it. If we’re calm and assertive, so are they. So when meeting someone with a disability, try to see them as  you do any other person who just happens to be rolling by you instead of walking. And if your child does have questions, you could simply say “Hi, I’m sorry to bother you but my son/daughter would like to ask you a question.” I don’t think that would upset me at all. Most of the time, a simple answer will do. An “Oh, my legs are so tired and this is how I get around,” is enough for some of them. I’ve always tried to make it age-appropriate, of course.

Once in the checkout line, a little boy maybe 3-4 was intrigued by my buttons, and his mama was so busy putting her groceries up on the checkout counter that she didn’t even notice him inching his way over to me. In slow motion he made his way to the control panel on my chair. It was hilarious seeing his tiny finger outreached, itching to know what it would do if he could only push it! I just slowly turned the chair off before he got to it and was trying​ to come up with a cool explanation for him. Right before I was able to explain, she grabbed his little hand, scolded him and apologized repeatedly. I couldn’t help but to laugh, and tell her it was fine and I thought it was adorable.

My advice would be to just let your children ask questions; it’s the only way we learn anything. Most of the time the parents are just as curious but society has taught them to not ask questions, that it’s rude. I don’t believe that. We should teach our children it’s OK to ask questions, to be politely curious about the world around them. We are helping them in the long run. By stopping them from doing so, you are scaring them or making them assume there is something to be frightened about. Maybe if we allow them this natural instinct to be curious and allow them to be accepting of different types of people, they won’t grow up to be judgmental or closed-minded adults.

If you happen to be home or somewhere you can have an actual conversation with your little one, maybe try this. Get them to grab/think of a few of their favorite toys. Let’s say a doll, some finger paint, or a bike. Your child loves all these toys, right? But you can’t paint with​ a doll. Can you brush your bike’s hair or feed it? And only your bike can race. But you still play with all of them, and they’re all different. They all look different and do different things, but you still value them.

What a dull world this would be if everyone looked the same and talked the same or wore the same clothes. Explain to them that the world is full of different kinds of people, and we all look different on the outside but we should learn to look at people’s hearts and judge based on a person’s character, not their appearance. The world would be a better place for it.

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9 Things I’d Like People to Know When Interacting With a Parent of a Child With a Disability

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As a mom of a child with a disability, I have heard many comments since my child was born. These comments come from friends, co-workers, acquaintances, strangers and family. In fact, many of the comments used to be overwhelming. It was as if some people didn’t know how to have compassion for a parent who was going through one of the most difficult times in her life. Their words used to make me feel as though I was not doing the best I could. I often felt as if no one understood. It seemed as though I was the only one in my world going through this dilemma.

I would hear things like: “You are so strong.” “Your child does not have special needs, there is nothing wrong with him.” “You are just over reacting.” ” You are too protective.” “He doesn’t have a medical condition, all boys act that way.” “He needs to have more social skills, he will not know how to live in the real world.” “But…your child is smart.” “You do a good a good job handling your situation by yourself.” “You are making up excuses.” “Most of the way he is, is your fault anyway, you smother him too much.” “Maybe you should have waited until you were married.” And before he was even born I was even told I should have an abortion.

I have spoken to so many moms of children with disabilities, and most of us have heard the same, if not similar responses.

If you know someone who parents a child with a disability, this is what you can keep in mind:

1. Our child means the world to us.

We will stay up all night, spend weekends and days researching different terms we may not understand in hopes of finding a solution to our problems. We love our children with all our heart, and want to see them live a good life.

2. Sometimes we worry we might not be doing enough.

There are many resources out there and many we never hear about until another parent brings it up. At that point, we may reach out to physicians to determine if this, too, could possibly help our children.

3. There are times when we are strong, and times when we are weak.

We prefer to have people around us who can recognize this and know when to speak and when to listen. We do not always need another opinion on what we should do or shouldn’t do; what the child should or should not eat; what type of clothes our child should wear; what activities to become involved in. We just need someone who will listen and who provides continued encouragement.

4. We would love to have a “me” day.

If you can kindly lend a hand every now and then, we would greatly appreciate the kindness. It’s not often we want to be away from our kids, but would love to visit the spa, have a date, or a girl’s night out sometimes. If you can provide this assistance, we would love that!

 

5. We appreciates words that will uplift us rather than tear us down.

With all we might have to endure on a daily basis, the last thing we want to hear is what we are not doing properly. Most of us know there is a right way and a wrong way to make remarks, but some people have not quite figured that out yet. It also helps perhaps if you become a little bit more familiar with the child’s developmental delays, learning disabilities or needs before you say to the mom that her gut instinct maybe inaccurate.

6. Please do not say, “It doesn’t look like your child has a disability.”

I have been told, ” Your child does not look like he has a medical condition, he looks just fine.” Well, there are many mental illnesses or disabilities that do not have a “face,” as I call it. So, you may never know by looking at a child is they have any medical or neurological challenges.

7. We realize we are not perfect and we love having a support system.

In my opinion the only perfect person who walked this earth was Jesus, and therefore there is not one perfect parent in the world. As parents kids with disabilities, we are no different, we make mistakes. The best thing you can offer is support. We want to know that you have compassion and that you actually care. So if you do not have anything supportive to say, then it may be best you do not say anything — it would really help her a lot.

8. We spend a lot of time with our child.

There isn’t one person in the world who will love our child like we do, understand their challenges as deep as we do, advocate for them daily, be there through the rough days and nights when our child is sick, teach them in love, and enjoy every moment with them. To tell a parent that he or she needs to (fill in the blank) because they spend too much time with their child is offensive.

9. Don’t say, “What is the name of that thing your child has again? Im sorry I always forget.”

I think this is so rude. Especially if you have known the mom and child for years and you still do not know the child’s disability. I would really be skeptical in leaving my child with anyone who has not taken the time to educate themselves. My mind would not be at rest the entire time I’d be away. I believe if you are sincerely interested in being a trustworthy friend, family member or caregiver, it’s imperative you at least remember the child’s medical condition.

So when a mom is struggling to use limited resources and is reaching out for help, the last thing she wants to hear are negative comments. Especially when she is trying everything in her power to help her child. She is just like any other mom, wanting to raise her child successfully but the effort requires more determination, research and so much more in order to provide her child with the best supports for a successful life.

How about you, what are some things that have been said to you? How were you able to remedy the situation?

A version of this post appeared on Tiffany C. Everette’s website

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Karin in her body cast at age 4.

Parents: Please Think Before Sharing Sensitive Photos of Your Kids With Disabilities

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The photo albums sit in a drawer in my office. Some of them depict a happy little girl playing with a ball, riding a horse, splashing in the pool with her mommy and daddy holding her. But mixed in with them are some not-so-happy ones. A little girl in a body cast, a blanket barely covering the cutout of her behind, and not hiding the white plaster immobilizing her legs. A little girl photographed by her own mother in a detached, clinical way to show how her body is misaligned due to cerebral palsy, her arms too stiff to reach above her head.

There are whole binders, too, of instructions for different physical therapy procedures, each illustrated with a photo of the girl’s body posed just as it is “supposed to be.” She has stopped smiling by now. There were videos, but those are lost somewhere in the basement of her childhood home. They show various exercises as her mother and physical therapist describe them, and she periodically interrupts to provide a mocking narration of the proceedings. The teen girl who hated her body and wore loose black t-shirts every day was forced to wear a bikini top and shorts, so those looking at the photos and videos later could see how to push and pull her into the “right” positions.

The little girl was me. And those photos are mine. Mine to keep or burn, mine to choose who can see them. Every time I look at many of them, I cry. I remember the pain after the surgery, but most of all I remember the itching under my cast, and how my parents held me as I screamed because I was so miserable. I remember the relentless physical therapy, the vain attempt to fix me long after I figured out that I wasn’t broken to begin with. I hate the photos of these moments, but I’m glad I have them. They’re a concrete reminder of what I experienced, validation of the depression and anger I struggled with as a teen and young adult, and context for understanding the body image issues I still live with today.

These photos are an important part of my story, but they’re also violating, invasive and deeply personal. So I don’t share them, except with a few very trusted people. But as I sit here, a woman with cerebral palsy moving into middle age, I realize that despite all I went through, I’m lucky. The Internet didn’t exist when I was a child, so those photos remain analog, safe from strangers’ eyes. Many younger people with disabilities aren’t so lucky.

I’ve seen so many parents sharing photos of their children’s surgical wounds, therapy sessions in which their child is clearly miserable, and even videos of meltdowns, toilet training problems, and worse. I want to ask them why. Why did you share that? Why did you think it was OK to share such an intimate, sensitive photo of your child without their consent? The Internet is forever, and those photos will haunt them long after their injuries have healed and their tears have dried. Yes, we live in a world where people overshare about the tiniest details of their lives, but there’s a difference between someone choosing to share the gory details of their own surgery or filming themselves at a difficult moment, and a parent doing the same.

Too often, parents share these types of photos not to help their child, but to make themselves feel better. It’s a way of saying look how hard things are for us, an appeal for sympathy. I understand it’s not easy to have a child with a disability; between the medical procedures and society’s prejudice, it can be overwhelming at times. Parents need support, and they need to talk to someone about what they’re going through and the images burned into their mind of their children in pain and struggling. There are places for that, forums where they can post semi-anonymously and the conversations can’t easily be linked to their child’s identity. But posting those images on social media, on a personal blog, or on a site with millions of viewers like The Mighty is harmful, and it can scar their child more permanently than any surgical procedure.

Not all parents share sensitive photos of their children with selfish intent. Sometimes they’re intending to show that a situation can be difficult at first, but things get better. Sometimes they’re trying to remove stigma by talking openly about issues. And on the one hand, they’re right. There is absolutely no shame in having surgeries, scars, or therapies. But graphic photos of a child’s heart surgery, videos of an autistic child crying or looking lost in therapy, and other intense images can bring back traumatic memories. If a mother took photos of her son’s stitched back after his spina bifida surgery, they may be important for her to keep and remember, but they are not hers to share. They are hers to show to her son so he can understand where he came from, and when he is old enough, he can decide whether or not he wants to share them with the world. It should be his right and his alone.

I understand making these kinds of decisions isn’t easy, and there are many gray areas. For example, if a child is injured and someone needs to be held accountable, sharing photos can put pressure on those responsible for seeing that justice is done. And I’m not suggesting that parents shouldn’t share any photos or only share happy moments. A non-graphic hospital photo of a child in bed resting, or getting gifts or a visit from family is OK. The picture of me above is one I feel comfortable sharing; although it brings back bad memories, it’s respectful of my body. I’m dressed as well as I can be under the circumstances, and I’m smiling. We shouldn’t have to censor our lives to make everyone in social media land think things are perfect. But there is a line between honesty and violating someone’s bodily integrity and privacy, and we should do our best to find it and honor it.

In our society we talk a lot about children with disabilities, and sometimes about elderly people with disabilities. Those of us in the middle, adults in our 20s, 30s, 40s, and 50s who’ve been disabled since childhood sometimes get forgotten. We go through a process of acceptance throughout our lives, trying to come to terms with what we went through as children. It can help us to have sensitive pictures, to understand where we came from and to consider how our parents felt and what they went through. But decisions about whether and when to share sensitive disability images should belong to the person in the photo, and them alone.

Please don’t share sensitive photos of your child with a disability. One day, your child will thank you.

Follow this journey on Free Wheelin’.

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