What You're Really Saying When You Call Me 'Inspirational'

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One of my favorite pieces of jewelry is a necklace with the words “not your inspiration” stamped on it. It makes me smile and laugh, but inevitably every time I wear it somebody comes up to me and asks, “Why does your necklace say that? Why wouldn’t you want to be an inspiration? What’s so bad about that?” Then I have to explain.

There’s nothing wrong with being an inspiration if what you’re doing is actually inspirational, but as a disabled person I have people come up to me all the time when I’m doing basic everyday things and tell me I’m an inspiration just for existing. I know they mean it as a compliment, just like people do when they tell me I’m brave for being who I am, but the truth is neither one of those things is a compliment. They’re actually quite the opposite. Occasionally when random strangers tells me I’m “so inspiring,” I’ll ask them why they think that. Usually they respond by telling me they just think it’s so inspiring to see someone like me out and about and living their life. Sometimes they even add “I don’t think I could do it if I was in your position. It makes me feel so much better about my life because I know it could be worse.” For someone like me, those words are definitely not complimentary; they actually hurt.

When people — who know nothing about me other than the fact that I’m a visibly disabled woman — tell me I’m inspiring simply for existing and going out in public, it minimizes my accomplishments, and even more, it minimizes my humanity, and turns me into nothing more than a trope whose purpose is to remind non-disabled people that they shouldn’t take their lives for granted because their lives could be worse, they could be just like me.

As a disabled person, I don’t like that my life is viewed as a constant reminder to non-disabled people that it could always be worse, and I don’t like that I’m considered inspirational simply for living the life I’ve been given. Disabled people don’t exist to inspire non-disabled people or to remind them that there are no excuses in life, or that life could always be worse. We don’t exist to be feel-good stories on the 5 o’clock news when we go to football games, get asked to prom or graduate high school. Those are just normal teenage things, and it shouldn’t be any more inspiring because you do them sitting in a wheelchair or with some other disability.

When you call a disabled person inspirational for doing normal everyday things like going on the subway or going to the grocery store, I believe you reinforce the idea that society’s expectations for disabled people are so low that we don’t really expect them to do anything. Furthermore, when you make an “inspiring” human interest story about a disabled person going on a date, becoming prom queen or even simply having friends, I believe you reinforce the idea that disabled people are somehow less human and less desirable than everybody else, and that if we have “normal” life experiences they are seen as inspiring, instead of realizing that we should expect and deserve those things just like everyone else.

Don’t get me wrong, there’s nothing bad about being inspiring. But I want to be inspiring for what I do rather than simply for who I am. I want to be inspiring for doing something truly inspirational. I want to be inspiring for the changes that I make in the world, rather than the fact that I do them sitting down.

Follow this journey on Claiming Crip.

The Mighty is asking the following: What’s one thing people might not know or realize about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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A Request for RJ Mitte, From a Woman With Cerebral Palsy

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Dear RJ,

Hi. I’m Alice. I’m 20, live in England and go to Sheffield Hallam University to study film and screenwriting. I don’t suppose you’ll have heard of me, but that’s OK, because until recently, I hadn’t heard of you either. Not until the video changed everything.

When I was 12 months old, I was diagnosed with cerebral palsy (CP). My parents didn’t know what to expect, but as I grew older it became apparent that I couldn’t walk. I now use a powered wheelchair and have a scoliosis curve in my back. It’s not developing, however it aches a lot, which is a pain. Enough of the negative stuff though; that’s not what we’re about.

What we are about is being active. A few weeks ago, I posted a little flashcard video onto my Facebook page, holding up little paper notes that gave details of me and my story; I eventually want to be a director/screenwriter, making movies in Hollywood. I also want to make the world a better place. People must have liked it, because it currently has 13,800 views at this time of writing, and I’ve been asked to give motivational talks. I’m sure you’ll agree it feels amazing to have people admire you, when previously all we might’ve gotten were awkward questions and patronizing tones.

In the middle of all of this, a friend and I were talking one night, and she mentioned you to me. I’m so out of the loop with TV that I originally thought you were the guy who played Jesse Pinkman (oops!), but a quick Google search proved me wrong. I read up on you and found myself open-mouthed, because it was as if someone had just gone into my brain and pulled out thoughts I’d been keeping to myself for years.

Growing up with CP, as I’m sure you’ll agree, was tough, because I was in a halfway house between disabled and able-bodied. I didn’t want to be characterized by my disability, but rather my passion for books, painting and film soundtracks, and when you have a disability, you tend to be grouped together with people where the only thing you might have in common is your disability. That said, I didn’t really get on with able-bodied kids much either. There were a few, admittedly, who were accepting, but on the whole they seemed shallow and didn’t seem to realize how hard life could truly be. I’ve been in the halfway house ever since; while in no way was I going to try and hide my disability, there was also no way I was going to be cuddly and cute, either.

Then there you were, with an impressive acting career under your belt, a modeling contract and an empowering activist role. I decided to watch “Breaking Bad.”

There is a scene in episode two of “Breaking Bad” where Junior is in a changing room. He can’t put on a pair of jeans, and he pulls a face, rolling his eyes up to the ceiling as his dad comes in to help him. I know that face, because I’ve pulled that face. It is the face of frustration and annoyance that you can’t even get dressed by yourself, and you feel weak and pathetic. It is a face that only an actor who had truly experienced CP would know how to do.

Please, RJ, if you get a chance: Watch my video. It’s not long, about four minutes. I genuinely think disability rights may well be the biggest equality fight of the 21st century – and you can tell it’s an issue because no one talks about it. No one fights for us, and it’s inequality of the highest order. I am 100 percent behind you when you say disability is strength, not a weakness. We deal with so much negativity every day – from people around us, from inaccessibility issues, sometimes even from our own bodies that cause us so much discomfort. What’s weak about that?

I’d love to collaborate with you on bringing disability rights to the forefront. You’re speaking what I’ve been thinking all this time, and the reaction I got from my video shows it is time for change. Let’s be strong, be an example, and show the world exactly how strong people with cerebral palsy are. Let’s prove to the world we’re not breaking… we’re bad.

All the best,

Alice

Just a little video I made. Hope it gives you motivation! Please share, and don’t forget to check out my other films at https://www.youtube.com/user/HeartOfCelluloid/videos?view=0&shelf_id=0&sort=dd <3

Posted by Alice Barker on Thursday, September 3, 2015

 

Lead photo source: rjmitte on Instagram

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To the People Who React to My Disability With 'I'm Sorry'

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Often people approach me and ask the about my chair. Sometimes it’s a little awkward, but when they approach it the right way, and I decide to answer, the conversation usually goes a something like this:

Person: “So if you don’t mind, may I ask why you’re in a wheelchair?”

Me: “I have cerebral palsy. I was born this way, it’s just how I am, I have always been in a wheelchair.”

Person: “Oh! I’m so sorry! That must suck. I didn’t know.”

Me: “That’s OK, don’t be sorry, I’m not. It’s just part of who I am.”

Person: “I can’t even imagine. It must just be so awful. You’re so brave!”

Me: (Screams internally.) “I’m really not brave, I’m just a person. Have a nice day.”

The truth is, I can’t stand these conversations. I can’t stand that people think they are being nice by apologizing for my very existence. The truth is, my life may be different from the average, but it’s nothing to be sorry for. When you apologize for my identity, you are reinforcing the idea that who I am, who I was born to be is anything but desirable. When you apologize for my identity, you are signaling to me that I should feel bad about it too, and for a long time I did.

For a long time, my disability and my wheelchair were everything that was wrong with me. These things were everything that made me different. These things were everything that separated me from what was normal, and I was too young and too caught up in our current cultural narrative to see the truth. For years I wished that I could be anything but who I was. For years I wished I could be normal the way our society defines it, just so people would stop staring. For years I believed I was the problem, and if I could just be different everything else would be, too. For years I believed the lie that I was something to be sorry for.

From an outsider perspective it’s easy to look at disability and think that’s something to be sorry for, but that’s not the truth. Who I am today, the girl people call brave and smart and strong-willed and a million other things, I am because of my disability, not in spite of it. My dreams, my passions, my purpose and my drive are a direct result of who I am, not a shocking anomaly.

When you apologize for my wheelchair, my disability, you apologize for the person I’ve become. When you apologize for my wheelchair, you make it seem like I’m the problem, like who I am is so bad that I deserve an apology for just having to live. My wheelchair is part of who I am, as is my disability, and I am proud of them. They have helped to define me and shape the way I see the world. They have given me some of my best friends and greatest life goals. These things are no longer what separates me from others, but rather are what has given me some of the people I love the most, who understand me and love me back — not in spite of who I am, but precisely because of it. To me, this is amazing, and certainly nothing to be sorry for.

If you want to be sorry for something, apologize for discrimination. Apologize for the fact that there are still places in this country I cannot go. Apologize for the fact that people treat me differently just because I roll instead of walk. Apologize for the fact that in a prestigious college interview, I was told I wouldn’t like the school because “there are not many people like you there.”

If you want to apologize for something, apologize for inequality. Apologize for the stunning lack of accessible housing and accessible transportation. Apologize for the ridiculously high unemployment rate in the disability community. Apologize for staring. Apologize for treating me like a little girl even though I’m a 23-year-old woman. Apologize for stereotypes and stigmatization.

If you want to apologize for something, apologize for all those things, because all of those things are worth being sorry about. But don’t apologize for my identity. Don’t apologize for who I am. Don’t apologize for my wheelchair. It allows me to live the amazing life that I have. Don’t apologize for what makes me different. I’m not ashamed of it, and I’m not sorry. You shouldn’t be either.

Karin Hitselberger

Follow this journey on Claiming Crip.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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My Answer to the Question Every Doctor Asks Me About My Son

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11782266_10107302601360151_1597732830068564588_o My son Bunz does an awesome job of enjoying life while navigating two disabilities: cerebral palsy and epilepsy. In his seven years on this planet, we’ve met with developmental pediatricians, neurologists, epileptologists, physiatrists, neuropsychologists, school specialists, physical therapists, occupational therapists, speech therapists, feeding therapists, gastroenterologists, therapeutic horses, aquatic therapists, music therapists, craniosacral therapists, myofascial therapists, chiropractors, Feldenkrais and Anat Baniel practitoners, surgeons, podiatrists and others to help him navigate these challenges.

They all ask the same thing: “What do you want me to know about your child?”

“What do you want me to know about your child?”

“What do you want me to know about your child?”

“What do you want me to know about your child?”

Well, what I really want you to know about my child is not relevant to the task at hand. But then again, maybe it is. It’s relevant to Bunz, after all — to his life and perspective and understanding of where he fits in this world.

Depending on how you think about it, What I Want You to Know About My Child may have nothing to do with the care you provide him in this moment. Or it may have everything to do with it.

Because what I want you to know is this:

That while my child fixates on your overgrown beard during our consultation, deep down he’s sensitive and he’s listening. To us. To all the things we’re saying – in front of him, right now – things he can do or can’t do, things he struggles with or finds challenging. I want you to know that when you say he has good muscle tone, he wears that routine observation like a badge of honor and asks me on the way home what it might mean. Whether there’s a shred of something to be proud of in those words. Because like all of us, he wants to be great. He wants to belong.

He wants to be enough.

I want you to know that some of the things you observe to be difficult for my child are the very things he’s worked hard to improve on for a year or sometimes more. And so I want to tell you – quickly before you say anything to defeat his sense of accomplishment – that he’s come a long way. Even though we all recognize he’s not there yet. Even though he might get there eventually, or he might not. But I want you to know that for kids like Bunz, the way from “here” to “there” is a progression of baby steps. And he’s continually taking those steps.

I want you to know that even though we’re here to talk about all the things that are difficult for him, much of his life is spent being good at things. He’s good at math, reading and spelling, for example. He’s good at shaking hands with elderly people in nursing homes and looking into their eyes with a sincerity and warmth that belies his age. He gives amazing hugs and plays songs by ear. He’s good at remembering birthdays, noticing new haircuts and telling clever jokes. He’s good at making strangers laugh and bringing people together and diffusing tense situations. He has no ego and so he’s good at living his higher purpose.

I want you to know that whatever worked for the other kids probably won’t/might not work for Bunz. It takes creativity, music and a bit of a smartass personality to get him on board with whatever program you have in mind. I know this complicates things. Bunz pushes all of us to rise to the challenge, and I guarantee if you can make this work, you’ll be a more resourceful practitioner for it.

I want you to know that Bunz will talk about you long after we get home. A lot. Mostly he will ask us to invite you over for dinner and then insist you move in. But sometimes he will inform us that you had food stuck in your teeth. I’m sorry in advance for those times.

And finally, I want you to know that this kid has big dreams. That the first few times he met children who were nonverbal, he was visibly and dramatically shaken – he wanted so badly to help those children speak. One night a few weeks ago, he announced in a sleepy voice that he wants to be a “speech teacher” so he can help his friend Ben and every child learn to speak. But also, he told me as he drifted off to sleep, he still really wants to be a policeman … and so maybe he’ll drive his police car fast to the school to teach those kids.

I want you to know these things so we can help my son — and other kids like him — understand with certainty that their challenges don’t define them. That challenges evolve and change and sometimes even fade away, but character and strength remain.

I want you to know that my son is a character, for sure. But mostly, I want you to know that he is strong.

And he is Enough.

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Follow this journey on Team Bunz.

Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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Why I’m Talking About Sex and Intimacy as a Person With Cerebral Palsy

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Sex. A topic that can evoke feelings and thoughts of happiness and sadness, fear and joy, insecurity and intimacy, to name a few, whether an individual has cerebral palsy or not. But when you have CP, it can complicate matters a little, both physically and emotionally. And while I’ve been somewhat reluctant to write about this, I think it should be done, because after all, it can be a fairly important and normal aspect of people’s lives.

The Problem With Myself

My biggest concern about sex, quite simply, was whether I would ever get to experience it. In my mind, this was a totally legitimate question and one that I had no clear answer to at the time. I only had hope. Relationships in general were such a big obstacle for me growing up because the people I met when I was younger weren’t interested in being with someone with cerebral palsy.

But my own self-confidence was also down in the gutter, and I could not for the life of me understand why someone would want me. People usually pick up on that, and let me tell you, it’s not a chick/dude magnet. But as I grew older, my confidence in myself changed for the better, and relationships, and subsequently sex, weren’t just a pipe dream but also a realistic part of my future.

Another mental obstacle for me to overcome was to let others near my body in an intimate way. As a kid, I was used to getting help with various tasks, some more private than others. So I wasn’t unaccustomed to having less privacy in some areas, but that was in a totally different setting. When it came to intimate and sexual settings, I felt way more uncomfortable, in part because I was uncomfortable with my own body.

Silly things like scars suddenly started became a source of worry when they hadn’t been before. My stiffness and clumsy movement became a source of embarrassment as well. It took many hours of thinking and experience before I finally became comfortable with letting someone so close. But as with all things in life, we grow quicker when we are outside our comfort zone, as long as it’s our own choice at least.

I remember the first time I had sex, I was unsure and insecure (probably like most other people). However, unlike most other people, I was also unsure because of my CP. Would I be able to do everything? What if I started to get spasms or cramps in the middle of it? How embarrassing! Will she think I’m clumsy? Should I tell her I’m nervous about this? These questions and concerns were going through my head prior to my first time. I remember deciding not to say a word because I was too insecure about it. And, quite frankly, I didn’t even know what to expect myself. For the first time in my life, I didn’t know how my body would react.

It actually went over fairly well all things considered, and it ended up giving me some additional benefits (I think). Because of my insecurities with myself, I ended up focusing on her a lot, simply because it was easier and I had less chance of messing up. I don’t think she realized that was the reason, but I don’t think she minded either way.

In hindsight, I think I should have said something beforehand. We ended up talking about these issues as we got more comfortable with the situation. But if I had talked it through with her beforehand, it might have made me far less tense and anxious and could have led to an even more enjoyable experience.

The Problems With Others

As mentioned above, when you’re not able-bodied, it can be harder to find someone to accept you as an equal and be open to a romantic relationship with you, not to mention have sex with you. Getting over the fact that it can be harder to find an accepting partner is challenging in it of itself, but it can be equally as difficult to find someone who is OK with the thought of having sex with you, whether you’re in a relationship or in a more casual setting. 

And even if you find a partner, they may not treat you as you would expect them to treat everyone else in that situation. I’ve experienced being “handled with kid gloves” even as an adult at school by teachers, my parents or other adults (as well as friends) in every day situations, because they were unsure of what I could do on my own. That didn’t exactly make me feel very independent.

The same can unfortunately occur when it comes to sex. Your partner may go out of their way to be careful or not act as free and uninhibited as they normally would for fear of hurting you, which is quite ironic because people with CP can experience pain and discomfort to some degree every single day. But to your partner, you may be “fragile” due to your disability. This is why communication is so important. You should be open and honest about what you want, as well as respect your partner in their wishes.

As in many other areas for me, the devil is in the details, and so the small and seemingly simple things can really bring my self-esteem down. For example, because of a lack of fine motor skills, the unwrapping and application of a condom may not be the easiest task in the world. In fact, it’s much more difficult than any other part of the sexual experience normally. The best way I’ve found to tackle this issue is to tell your partner, and it will diffuse the situation and make it feel less intimidating and more light-hearted. Plus, your partner may be happy to help you.

The Benefits of a Good Sex Life

There can be numerous benefits to a healthy sex life for those with CP. A Dutch study indicated that sex may help relieve spasticity and stiffness, for example. But I think the rewards are just as much mental as they are physical. After I had my first sexual experience, I grew in confidence, not just sexually, but as a person overall. It was a pretty big part of normal life that I had experienced. I felt less different, and I felt that the CP defined me in a lesser extent than before.

My advice to others would be to work on becoming comfortable with your sexuality, especially in regards to self-confidence and self-image. Seek a happy and fulfilling sex life if that’s what you want, and don’t let a diagnosis of CP stop you. Unfortunately, there is a lack of focus on these issues, and sexuality still seems somewhat of a taboo for people with disabilities, at least in my experience, and it really shouldn’t be.

Also, I suggest focusing on what you can do well in regards to sex and not how you are limited. You should find what you feel comfortable with and cultivate that, rather than feeding the insecurities.

Lastly, as I mentioned earlier, communication with your partner is absolutely essential.

A version of this post originally appeared on CPExperience.

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10 Things I Wish My Parents Knew While Raising a Child With Special Needs

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Learning how to live with cerebral palsy and finding my perfect place in the world turned out to be quite an adventure for not just me, but for my parents as well. Now that I’m older, I thought about the 10 things I wish my parents knew while raising a child with special needs.

1. You are the perfect parents for me.

I know you didn’t sign up for a kid like me. I also know you sometimes think you can’t face what it takes to raise me. I want you to know that this isn’t true. I believe I chose you. Whatever you need to learn, you will learn. The strength you think you need will come from somewhere. The people you need to meet will show up when you need them.

2. This is the perfect life for me.

My life is a very special one. I believe I will impact the world in a unique and wonderful way. Remember this when your heart is breaking because you want a path for me that is so much easier than this one.

3. I need you to find your own spiritual path.

The road we’re on is not an easy one. To be successful, you’ll need all the spiritual strength you can muster for the tough days. You’ll need to help me when my spiritual strength is out the window. Often, you will see signs of my determination and be amazed by it. That’s not enough. You’ll have to find your own answers. I’m depending on you for it.

4. However you feel about me is OK.

Sometimes you’ll feel tired and helpless, and it will seem like you won’t be able to provide care for me for one more day. Sometimes you’ll be mad because there seems to be no escaping me. That’s OK. There is no way you could take care of me without having those days.

Sometimes you may watch people look at me and be a bit embarrassed that I’m not doing better. That does not make you a bad parent. It just means you’re human.

Know that when you face many of these days in a row, it’s time for you to get somebody else to take care of me, just long enough for you to regenerate yourself. It’s always important to let people help you. I’m depending on you to do whatever you need to do to take care of yourself.

5. However I feel about my disability is OK.

Some days you’ll be amazed at how content I am, and you’ll wonder how in the world I do it. Treasure those days. Some days I will be discouraged, some days I will be mad and some days I will even feel really sorry for myself. Don’t panic. I’ll come back around again. If you let me express these unattractive feelings, they have much less power. Even typical folks feel sorry for themselves sometimes.

6. Let me try things I want to try even if you’re sure I’ll fail.

I know you want to protect me — that’s your job, I’m your child. But I need you to understand my survival is always going to depend on my determination. Part of my own process is to figure out what my limitations really are. Sometimes I may want to try to do things that seem impossible to you. Please encourage me anyway. It is the willingness to try that is important — success is a bonus. Know that if I fail, I’ll get over it.

7. Don’t worry about my whole life today.

You’ll worry about how my life will turn out. You will lose hours of sleep trying to figure out how I will survive in the world after you are gone. This isn’t helpful to me. Just help me focus on today. The more you can focus on whatever we have to face today, the more you will be helping me develop the skills I will need when it is time for me to get along without you.

8. Sometimes people will be mean to me or scared of me. I expect you to stick up for me but, I don’t expect you to change the world.

There are a lot of really wonderful people in the world. You and I will meet many of them. But there will also be people who will be afraid of me or not treat me fairly. They’ll assume things about me that aren’t true. They may even assume things about you that aren’t true. I expect you to speak up for me when you can. But I also need for you to be able to let it go. It won’t help me if you’re mad and defensive all the time. If you are, there are people who may not want to help me just because it’s too hard for them to deal with you.

9. Finding good doctors and professionals is important, but you know me better than they do. I expect you to trust your own instincts about what is good for me.

The doctors and therapists who work with me are going to be very important for the quality of my life. Some of them will be amazing and others won’t be.  Often, it will be up to you to decide which is which. Listen to them and know that what they say is important, but also remember you know me best. If something they suggest doesn’t feel right to you, listen to that small voice in your head and speak up.

10. I really hope we can laugh.

I believe laughing was probably God’s best idea. It will be the one thing that can bring joy to our lives the quickest. If I get stuck in a mud puddle, it’s probably funny. If you’re lifting me and we both fall on the floor in a heap, that’s probably funny, too. A good joke is worth taking the time to laugh at. Help me not get so caught up in the serious problems we face every day to forget about laughing.

The author Sally Ross Brown

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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