8 'Helpful' Things That Don’t Really Help People With Disabilities

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An interesting conversation picked up on Reddit this week when a user posted the following question to people with disabilities: “What is something that we (presumably people without disabilities) do that we think helps, but it really doesn’t?” In just a day, more than 9,000 comments rolled in, and people living with all types of health conditions — from physical disabilities to developmental delays to invisible illnesses — offered a lot of great insight.

If you’re unfamiliar with what it’s like to live with a health condition, you may not even realize when you’re not actually being that helpful. (That’s OK because that’s where we come in). According to Redditors, here are eight common mistakes people make when they’re trying to help:

1. Helping without asking.

I love when people help me, but please always ask first, and if I say, ‘No thanks, I’ve got it,’ then go on with your day. Or better yet, strike up a conversation!”

“A friend of a friend of mine who [uses a wheelchair] told us how people constantly offer to push her to her destination, and often times go to start push (sic) her along. One person said, ‘I’m helping!’ as he started pushing her in her chair. She yelled back, ‘No, you’re kidnapping!!’ He stopped.”

2. Changing the way you talk.

A wheelchair doesn’t make someone hard of hearing. Or stupid. Stop acting like it does.”

“I’m hearing impaired (or hard of hearing, as the Deaf community prefers to put it). Do. Not. Yell at top volume, reeeaaaaaallllllly painfully slow. Just like it isn’t going to help a Spanish person understand the English you are speaking, it’s going to make you look real stupid to me… and everyone else we are around. It might work for you with Grandma, but I’m not your granny. Face me so I can read your lips, speak sharp and speak clear and we cool.”

Don’t bend down to my level to talk to me, I can hear you perfectly well, and it’s incredibly demeaning.”

“I have an autism spectrum disorder… Just talk to me like you would anyone else, and if I need something explained to me, I will ask. It’s that simple.”

3. Saying “But you don’t look [disabled, sick, etc.]”

“‘But you don’t look sick.’ ‘Well you don’t look like a doctor, but that’s just my opinion.'”

“The thing is, people without visible disabilities… often hear ‘But you don’t look sick’ as an excuse for the person saying it to not take the condition seriously or not give proper accommodations. In those cases it’s not a compliment, it’s an accusation. It happens way more often than you’d expect, and since it’s not just annoying but often an obstacle to actually getting the help needed to get on with your life, it gets old fast.”

4. Feeling sorry.

I don’t want to be pitied for something I can’t do anything about. It makes me feel less human/inferior.”

“Pity is condescending, it ignores a person’s talents, relationships, accomplishments and joys and paints them as nothing more than a thing that suffers.”

5. Offering medical advice.

“My husband has chronic migraines. I can’t tell you the number of times someone suggests f**king Excedrin. ‘Oh really? I’ve lived with migraines for 20 years and I never thought to try over-the-counter Excedrin! Tell me more about how it helped you with a really bad headache once.'”

Someone told me cashews could cure depression. I… may not have been the most tactful in my response.”

“Believe me, unless you are a researcher who specializes in my condition, you probably don’t know more about treatments than me.

6. Calling a person “inspiring” or “brave.”

I laugh when people call me an inspiration. If they only knew. No Hallmark movies to be made about me anytime soon. lol”

“This! I’m being praised for going to university and doing normal random everyday stuff. What am I supposed to do, sit on my ass all day and wait to die?

“There’s nothing brave or strong about it. I exist. My strength and courage comes from what I do. Not what I am.

7. Shrugging off an illness you can’t see.

“I have a chronic pain condition. Please don’t tell me it’s all in my head. Everything we experience, we experience through the brain. Of course it’s in my head.”

“Just because someone looks OK to you, doesn’t mean you should treat them like they’re faking it.”

8. Avoiding eye contact or keeping your questions to yourself.

“I have some form of Tourette’s syndrome. I love questions. Questions show concern and interest, and that is (for me at least) infinitely more preferable than awkward tension.”

“I only have one eye. Look, I already know I look different. I understand that your kid is curious. That’s a good thing. Let me answer their questions. They can learn something and find out that I’m still a nice guy even though I look different. Don’t make them feel afraid to talk to people who don’t look exactly like them.”

But remember, everyone is different.

“Many of the things that some people don’t want could likewise be things others might welcome. The point is, everyone is different and has different needs and feelings about their situation in life. My advice is engage in a conversation and ask if there is anything you can do. If the answer is yes, help. If the answer is no, fine. This applies to everyone — not just those people with a clear physical impairment.

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To the Stranger Who Cried When He Held My Infant Daughter

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Sarah White's daughter I don’t think any parent goes into their 20-week ultrasound expecting to hear there’s a problem with their unborn child. I know we didn’t, but that’s exactly what happened. Our fourth child, our first together, our precious daughter, had brain abnormalities. From that day on it was a whirlwind of ultrasounds, meetings with doctors and genetic counselors, blood tests, an amnio and still no clear answers.

My fiance has a large family, so naturally news traveled fast. Rarely did a conversation with my mother-in-law end without her telling me “[so and so] is praying for you.” So, as thankful as I was, in that moment, hearing that my fiance’s cousin’s father-in-law had added us to his church prayer list was nothing overly significant.

As soon as our daughter was born, she began to defy the odds. The surgery to place a shunt in her brain that we were repeatedly told she would need immediately after birth, wasn’t necessary. The six-week NICU stay we were told to expect turned in to a short 13-day stay. We took our daughter home not knowing what her future would hold.

A few weeks later, we traveled the two hours to my fiance’s hometown for a birthday party. My mother-in-law, being the proud new grandma, proceeded to take our daughter around to introduce her to the family. She handed my infant daughter to a man I’d never seen before; I was a little uneasy. When tears began to run down this man’s cheeks, I was confused. It all made sense when he began to speak to her… telling her how hard he’d prayed for her every night, that his entire church was praying for her, how he never dreamed he would get to meet her, what a miracle she was. I promised myself he would see her again, he deserved to watch her grow. The next day, he died from an allergic reaction to a bee sting in his yard. I still think he gets to watch her grow.

My daughter is doing things doctors said she would never do: walking, talking, learning, laughing. She finally had to have that brain surgery and a second one. She has struggles. But I believe she also has someone in her corner in heaven. He was in her corner fighting for her before I could wrap my head around the fact there was a battle to fight. My fiance’s cousin’s father-in-law… my daughter’s first hero.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog [email protected]  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Boston Bombing Survivor Crosses Finish Line at the Site Where Her Life Forever Changed

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On April 15, 2013, Rebekah Gregory was hospitalized and fighting for her life following the Boston Marathon bombing. She’d been near the finish line cheering on the runners at the time of the attacks. Last April, as a tribute runshe crossed the finish line in a wheelchair. On Monday, she returned again to the site where her life was forever changed — this time, as a runner.

Last November, after numerous operations, Gregory had her left leg amputated below the knee. Just six months later, she was cleared to run the last three and a half miles of the Boston Marathon on her new prosthetic. She joined 30,000 others in crossing the 2015 finish line, Fox News reported.

This is the day… I take my life back,” Gregory wrote on her Facebook page the morning of the race.

Gregory, a Texas native, ran the last few miles of the race with her trainer, who is also an amputee, My Fox Boston reported. In an emotional finish, she collapsed in tears just beyond the painted finish line.

Watch the moving moment Gregory crossed the finish line in the video below.

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Special Needs Parents Are Hard to Get Along With

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Perhaps some of us special needs parents have snapped, yelled, spit or barked at friends or family, leaving them utterly confused about our behavior. Who can blame them for thinking, “Well that’s the last time I talk to her!” “What’s wrong with him?” “Is his disability sarcasm? He is so rude!” “Every time I talk to her I’m walking on eggshells!”

unhappy face sitting

Someone Googled, “Why are special needs parents hard to get along with.” And well, I don’t blame them for feeling that way… sometimes.

So let me start by saying that yes, sometimes, we are hard to get along with. If you caught us on a bad day, I could see why you turn around and walk away the next time you see us. But that is not the whole story. Yes, sometimes we can be abrasive and rude and sarcastic and hard to get along with… but there is a reason.

You see, so much of the world sees our kids as unlovable, as people without value, as a burden. Even the professionals who are supposed to be on our team can unfortunately communicate that our children’s lives have less meaning, and those messages might even come from the people who are close to us, like family or friends.We feel so alone, but if we don’t fight for our kids then who will?

And we fight, we fight so hard for our children to be included, to be considered, to be given a chance. We are on the defensive, constantly. It’s a battle, a battle that sometimes keeps us up at night, and unfortunately, we have to keep our guard up so often that we forget that there are times when we can put the guard down.

Sometimes we might be hard to get along with. But not always.

I think you would agree that it’s not easy being a parent. Being a special needs parent feels a little bit more challenging.

Would you extend me some grace and know that I have hard days? Will you be willing to forgive the rudeness and the fight? Some days I feel so vulnerable that ugliness comes out, when really, what I need is a friend, someone that I can talk to, someone that will listen, just listen.

And I need to remember that, too. I need to extend that same grace to you, because you do not live a life directly impacted by disability, and I cannot expect you to be at the same place of understanding I am at when this is not your life.

I knew so little about parenting children with disabilities when I started this journey. Actually, I knew so little about being a parent before I became a mother! I am still doing the best I can for all my kids, learning, messing up, some days getting things right. Being a special needs parent is not something that anyone can be prepared for. You just have to live it.

So I am sorry if I have ever offended you, it was not my intention. And I need to remember that as well, that you never intended to be offensive either. If I am hard to get along with, please offer me some grace. I will do the same for you. I know I need to extend the same consideration I want to receive back.

I need your friendship, I need your support. And I like to believe that you need mine, too, because this giving and taking is part of friendship.

Let’s do some more grace giving, some more forgiving, some more laughing, some more, “No big deal!”

A postscript: Some people are simply mean and inconsiderate human beings who have no qualms at making derogative comments. Well then, you had that coming. Nobody messes with our kids.

This post originally appeared on EllenStumbo.com.

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Please Don't Praise Your Kid for Playing With Mine

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Yes, it’s true, not every child takes the time to slow down and play with kids like mine (I have a child with Down syndrome and one with cerebral palsy), I’m aware of that, so when your kid plays with mine it makes me smile. I’m so thankful for your son or daughter. And I want to encourage that friendship. I think you do, too.

But can I be honest with you? I don’t want you to feel bad here, but I hope you can see what some of those statements say to me, as the parent of a child with a disability. When you say your kid is great because he/she chose to play with mine, at that very moment, your child went from seeing just another friend, to seeing kids like mine as different, as someone defined by their disability, as someone who is somehow flawed, and only an exceptional person plays with them or becomes their friend. I know that is not what you are trying to communicate, I know that, but unfortunately, it does.

You encourage your children to be friends with everyone and to embrace differences, thank you! With statements of praise about how exceptional they are for playing with my kid, you might be communicating two things to them:

1. The friendship is all about your child and how wonderful they are, the friend with the disability becomes the outward display of that greatness.

2. It teaches a mentality that separates and makes those with a disability appear as less than those without disabilities: “They are the disabled, they are different, poor them, we should help them.”

Suddenly, I feel as if your child playing with mine is more about pity rather than a real friendship.

Would you praise your child like that for playing with a typically developing kid? Probably not.

Our words are so powerful. They shape our kids, their attitudes, their perceptions.

We all want to show our kids we’re proud; we want to encourage them when we see positive traits in them. But playing with a child who has a disability should not be seen as heroic or exceptional. Be proud because they see a friend first and not the disability, and please help them to keep it that way.

You can do that by avoiding the praise and instead asking questions about their friendship, questions that sound more like, “I saw you playing with Nichole, what were the two of you playing?” “Hey, you were making Carlos laugh, were you telling him your new knock-knock jokes?” “What was your favorite thing about playing with Micah?”

Is it ever OK to bring up the differences? If appropriate, yes! Your child might even ask you why, for example, my daughter who has Down syndrome is hard to understand when she talks. Believe me, if your kids have questions, they’ll ask! But it’s very different for a parent to say, “You are so wonderful for playing with Nina because she has cerebral palsy,” as opposed to saying, “Hey buddy, did you ask Nina if she wanted to play tag again? I noticed she was really tired and having a hard time keeping up.”

Let’s teach our kids that playing with other kids, even those with a disability, is about friendship. Genuine friendship. If you want to praise your kid for being a good friend, then praise them for the same reasons you would praise them for positive interactions with any friend of any ability.

“You are the kindest person I know, you gave Charlie your last piece of candy!”

“Oh honey, you’re so wonderful, I loved that song you were singing for Tina, you made her smile and you made me smile even bigger! Will you sing that for me again?”

“You are the sweetest thing, you know? I love how you treat all your friends with kindness.”

“You have a heart of gold, I would have been mad if my friend had laughed at me, but you just laughed it off and kept on playing.”

These are the qualities we need to be cultivating in our kids.

And follow in your child’s lead: make a new friend, maybe even someone with a disability. No, you will not be an exceptional person for doing that, you will just be a little bit richer for having a new friend.

This post originally appeared on EllenStumbo.com.

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My Favorite Story on The Mighty This Year

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A year ago today, we launched this website. I wrote a story that day about my daughter’s disability — how I got started down this path — and explained why we created The Mighty:

Stories that inspire people – that can change the path of someone’s day, as my wife says – are a great start, but we are going after much more. Ultimately we want to improve the lives of people facing disease, disorder and disability. This is not a small ambition. It requires a unique business model and strong relationships with non-profits, advertisers, media companies, researchers, educators, advocates and most importantly, people like you. Without a community of people who care and share, we have nothing.

The story of our first year is really a story about that community who cares and shares.

It’s the story of a team of top-notch digital media professionals pouring their time and talent into something they truly believe in. Starting with a single editor, we are now a community of nearly 900 writers who are turning honest stories into hope, strength and courage for others.

The Mighty team
The Mighty team

It’s the story of building relationships with hundreds of organizations — non-profits, media companies, and more – to get our stories in front of people who they can help. To date, our stories have been read more than 30,000,000 times.

But really it’s about the power those stories have on people.

It’s the story of a teacher who started “Mighty Mondays” in her classroom, sharing our posts with her students. “It makes you think twice about treating people differently,” one said.

It’s the story of how a documentary finally got made: “It wasn’t until the first piece I wrote for The Mighty went up and I heard people’s reactions, that I felt I could and should finish the film.”

And it’s this story that landed in our email inbox a couple weeks ago. It’s my favorite because it explains better than I ever could why we do what we do.

Thank you.

I know most emails and letters start out with “To Whom It May Concern” or “Dear So and So”. I felt that I needed to start out with what was important. A simple Thank You. Like most people these days, I spend a lot of time at a computer and online and you always see the “Contact Us” sections on websites. This is the first time I have wanted to write a positive email. Most of the time I am only writing to express concern or complain about something I have seen or read. But not this time. I found myself searching for the “Contact Us” section to write praise and thanks. I am a very new user to The Mighty and I am only upset and disappointed that I did not find it sooner! I feel like there is finally a place where others understand and can laugh and cry and poke fun, and we are not being judged. Where have you been for the last 7 years?!?

Just so you have an understanding as to why I was so set on writing you, I would like to give you a small glance at my life. My husband and I had only been married for about seven months when we found out I was pregnant. We were ecstatic as most newlywed couples are when they find out they are having a baby. The pregnancy went well until six months in. I started having complications. Our son was born at 33 weeks and spent about a month in the NICU. He was little, but strong, and seemed perfectly fine and healthy when we got to take him home. That would only last for a few months. He started to get sick and was not getting much bigger. After many, many trips to the hospital and what seemed like hundreds of tests we finally had a reason. He was diagnosed with a rare genetic disorder, Gaucher Disease. We had no idea what we were up against and felt like we were alone. After multiple surgeries, countless hospital stays, appointments with specialists, and meetings with hospice care our little guy lost his battle at the age of two. After he passed, we still felt alone. We had nobody that knew what we had gone through or how to approach us. Your website gave me a place that I can feel comfortable again.

I found The Mighty after someone on Facebook posted the story about the 10 things that a parent who lost a child worries about. As soon as I opened that page, I knew I was among others who would understand. I did not have to walk on eggshells any more. I could speak freely and read what others were experiencing. It was so eye opening. I read another story in which a mother had “written a letter” to the doctors about why they would not be ending their son’s life. She explained that she had already lost a child, so she knew what it meant for their second child to be dying. But she made a stand against their medical team and told them, “I understand what we are facing, but I will not let you bulldoze me into decisions. This is our child and we will make the decisions when appropriate.” My husband and I have been going back and forth about having a second child. This article made that decision for me. I now have the hope and strength to be able to explain to the medical teams and family members that “yes, we know we could possibly lose another child. But we would be gaining a beautiful child no matter what. We will love them with everything we have and be right beside them through everything they will go through. That does not change just because a disease decides it will. It does not and will not run our lives. We decide when to be happy. And we have decided we will be happy…with another baby.”

I apologize for the longwinded email. I get started on a subject and cannot seem to stop. I will try to finish this up now but I have one more thing to say.  Thank you, all of you. You have no idea how you have changed our lives…for the better.

~ A Very Thankful Mother in Missouri

Tina

I’m so proud of The Mighty community — our contributors, our readers, our partners and our staff. Thank you for playing a part in helping people like Tina. You’ve made year one a huge success and I have no doubt you’ll help us achieve far more in year two.

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