To My Fellow Parents, From a Sometimes Sensitive Special Needs Parent

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When my son is brought up in conversation, which is quite often, you mean well. I understand this. The conversation will always start off with, “How is your son doing? Did they find a diagnosis yet?” And my response will always be, “He is doing as well as he can be! No, no diagnosis yet.” The rest of the conversation is variable but typically includes a well-meaning variation of, “Oh, he will all right. One of these days, he is going to just get better and will surprise us all!”

This is not the truth, and on my bad days, I can subconsciously find this response insensitive. When you talk about my son getting married someday, when you talk about him running around at school someday, it can stir emotions in me that can dictate the rest of my day. I know you mean well. I know you don’t quite know what to say. I smile and say, “Yeah, that will be something.”

The truth is, my son more than likely isn’t going to get married or run around like a typical child at recess during school. My son has a disease that cannot be diagnosed. He suffers from a neurological and/or neuromuscular disease that have the best doctors scratching their heads. My son has a ventilator and a gastrostomy tube.

I do, in fact, have a very happy son. He is not like your child, though. My son cannot talk, sit, crawl, roll, walk, eat or reposition himself. But goodness can he smile, laugh, grab his toys and pull my hair. He is the most positive thing in my life, my reason for smiling and having hope in life.

When I get down about wishing I could hear my son cry or wish he could tell me what he needs, your response is, “No you are so lucky not having a baby that you can hear cry or ask a million questions. It is a headache.” In reality, I would love for my son to cry, and I would answer all million and one of his questions. It would be so comforting not to have to walk into his room and see he has been crying, leaving me with the heartache of not being able to help him sooner if only I had known.

When I reminisce about the short two months I was able to feed him baby food, your response is, “Children are such picky eaters, consider yourself lucky.” Lucky? I cry over how much I miss holding that spoon and watching his delight while he consumed his sweet potatoes. I miss being covered head to toe in carrots. I know you mean well. I know feeding time is probably stressful for you, but our favorite bonding time was stripped from us without warning, in the blink of an eye.

I look at other parents and I cannot imagine the stressors you deal with on a daily basis. It makes me smile. Seeing the disasters that can ensue and the embarrassing scenarios that can unfold, it makes me happy. Although I do not get to experience these types of things, I am so glad that you do. And I am always here to laugh with you or listen while you vent about the rollercoaster of parenting. I just ask that you be gentle with me. Even though I handle it well on the surface, inside I might be torn apart. I know the side you see of our life looks normal, full of bliss and stress-free. Behind the scenes is a place most of you do not get to experience. Underneath the smiles and accomplishments lie heartache, setbacks and fear. Be mindful. Be supportive. Be encouraging. I need it more than you know.

Sincerely,

A sometimes sensitive fellow parent

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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 YouTube Commenter Called My Son the R-Word, so I Reached Out to His Mom

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You wouldn’t think that blogging about parenting a child with special needs would incur disgust, wrath and vitriol. Yet over the years, it occasionally has. Mostly, I choose to pity the haters — what kind of pathetic human beings make fun of a kid with disability or attack a parent trying to raise awareness and respect? Do these people even have mothers? Yes, it seems, some do. And I know because I tracked down one of their moms.

A few years ago, I made a video to explain why the words “retard” and “retarded” are demeaning and hurtful. People regularly leave comments such as “What a retard” and “He’s a retard, no matter what you call him,” similar to ones left here when I’ve written on the topic. But one comment — “Your son is retarded. get over it. jesus christ go kill yourself already” — stood out, both for its hostility and because the commenter’s full name and photo were displayed. Anger flared as I stared at his face. He looked to be in his early 20s. I did stupid stuff in my 20s that I regret, to be sure. But nothing hurtful or cruel like this.

I write about my son, Max, in part to show just how much more a child is than his disability, and to help people better understand kids with special needs and be more welcoming toward them. I expect some to disagree with me when I take a stand, and that I’ll encounter ignorance and prejudice. But I had a visceral reaction to this guy. Not that commenters who hide behind the wall of anonymity and spew venom are any better — that makes them cowards, too. It was just that laying my eyes on an actual hater was disturbing. It made the possibility of my son someday encountering someone like him all too real. It made my mama-bear instincts kick into high gear.

Usually I just click “Report spam and abuse” and then “Hate speech or graphic violence.” This time, I decided to track the guy down. Facebook friends gave me some leads, but in the end it was remarkably easy: The “about” section on his Google+ page listed his college, city and state, along with a place where he’d once worked.

In a minute, I found his Facebook page. He was in a relationship. He was now studying music at an institute. And he clearly had no problem displaying his disdain:

People have varied approaches to dealing with haters and trolls. Jimmy Kimmel has an ongoing Celebrities Read Mean Tweets About Themselves series. Months ago the Holderness family, of Xmas Jammies fame, did a Comments of Love video, setting choice phrases such as “This family makes me want to sterilize myself” to the tune of “Seasons of Love” from “Rent” (which is why they had to take it down). Heather Armstrong of Dooce created a Monetizing The Hate website, complete with noxious emails and comments she gets — and revenue-earning ads. People also hunt down trolls with tools like IP Tracker Online and other tactics, as detailed in this Forbes article.

I told the troll’s mother.

I Googled around some more. This guy’s parents held civic leadership and community positions and seemed like good people. I wondered if the mom might want to know what her son was up to; if this were my child, I would, no matter his age. His online nastiness could come back to haunt him during a job search. His comment was traceable to their family and could have an impact on them. And maybe, just maybe, his mother would want to let him know how awful he’d been.

Some time later, I wrote her a letter. I hesitated to send it; was I being stalker-like? But the feeling passed; I wasn’t the creep. This is the note I mailed:

Dear Ms. ____,

My name is Ellen Seidman. I’m a journalist, but I’m writing to you as a mother about a matter concerning your son, ___.

I write a blog called Love That Max. Max is my son, and he has cerebral palsy and intellectual disability. Several years ago, I started speaking out against the use of the word “retard,” which perpetuates negative stereotypes of kids and adults with intellectual disability. The Special Olympics has a dedicated campaign for this, Spread The Word To End The Word. Many parents like myself — who want nothing more than respect for our children — have spread the word.

I made an awareness-raising video that I put on YouTube called “Would You Call My Child A Retard?” It’s attracted many comments over the years, including one your son left several months ago. Here’s a photo of the comment he left:

You can see it here: https://www.youtube.com/watch?v=16CxvRjx-34

I could have reported this to YouTube as “hate speech or graphic violence” or “harassment or bullying,” which is what I typically do with comments that are offensive. But this comment crossed the line, as it was both cruel and seemingly threatening. Plus, your son chose to comment using his photo and full name.     

It was simple enough to Google ___ and find information about him. I had many thoughts about how to proceed—should I contact his school and tell them? Should I contact him directly? But in the end I thought, I’m going to tell his mother. I hope she’d like to know.

If you find this unnerving, please try to imagine how I felt when I saw your son’s comment. I usually don’t let them bother me; I choose to pity the people who say such things. But this one has stayed on my mind.

I hope you seize this opportunity to speak with your son about respecting people with differences. Words do matter. The way we describe and talk about people with disabilities matters. My son and others like him have enough challenges and roadblocks to overcome in this world. Using respectful language isn’t the answer to making people more welcoming to him (if only), but every bit helps.

Like many parents of children with special needs, I will do anything and everything I can to pave the way for my kid, even reaching out to total strangers.

An apology from your son would be appropriate. If nothing else, I ask that your son delete his comment from my YouTube video. I will not do that for him, and it will remain there until he does.

Thank you for your attention.

I was dubious I’d hear back. About a month later, though, I got an email from her.

She wrote that she was “sad and sorry” to receive my note. She said she has two older siblings who are deaf and that growing up, “they were frequently subjected to being teased, ignored, ridiculed and called ‘retards.'” She noted, “I have taken great pains to educate my children about the importance of valuing differences and standing up for others.” She told me that she’d spoken to her son about my letter and the hurtfulness of his comments. She said her son was a “troubled young man” and while she had worked to address his issues, she rarely saw him.

“Please accept my heartfelt apology for the pain my son’s comments have caused you,” she said.

There it was, proof that the commenter had issues — exactly what you suspect about haters. And a sobering reminder that mean people can be raised by decent parents. I felt badly for her. Yet I thought she had to know her adult son’s shameful behavior was linkable to her, and he needed to know there are consequences. I hoped her words had an impact on him. In the end, I didn’t regret reaching out to her.

I emailed back, thanking her for her apology. I said I hoped her son would soon be on a better path. “You never know, do you, what course parenthood will take,” I wrote.

I waited a while to see if this guy would remove his comment. He didn’t.

Months later, I went to YouTube and deleted it myself.

This post originally appeared on Love That Max. More from the blog:
22 free things, services and grants for kids with special needs
5 great tips for helping kids with special needs brush their teeth
Special needs motherhood, pretty much summed up in GIFs

Spread the Word to End the Word! You can head here to pledge to stop using the R-word. It’s a step toward creating more accepting attitudes and communities for all people.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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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When People Think Life Is Rough Because My Child Has Down Syndrome

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It’s 10 a.m. I’ve had two cups of coffee but am dreaming of something stronger. I’m not even a drinker. I also can’t stop thinking about bedtime. Oh, precious bedtime. I need you. It’s been a hard day, so far. Really stinking hard.

When people hear that our youngest daughter, Willow, has Down syndrome, I think many jump to the conclusion that our lives must be rough. They’re right, kind of. Most of our days are peppered with problems, but Down syndrome isn’t one of them. I also don’t know if I can call our lives “rough.” Busy? Yes. Challenging? Yes. Abnormal? No. Take today, for example:

Willow woke up with a cold. I can’t blame Down syndrome. I can blame my daughter’s desire to put everything in her mouth, including the germ-infested belt that’s supposed to keep her strapped into my shopping cart. I sure hope it tasted good.

My dog got sprayed by a skunk. I can’t blame Down syndrome. I can blame a very rude rodent. Did I mention this happened in our backyard? At 6:30 a.m.! We live in the middle of the city, right next to a busy college! What business does a skunk have in my backyard?

I ran out of waffles and had to deal with crabby kids. I can’t blame Down syndrome. I can blame my husband. I buy my waffles from Sam’s Club and he always makes fun of me when I shop there. He claims I can’t go there without dropping a small fortune. In an effort to avoid his jokes, I’ve avoided going there. Apparently, that plan backfired.

I forgot to comb my hair and apply antiperspirant before leaving the house to run errands. I can’t blame Down syndrome. I can blame mommy brain. It just sucks that one of the places I had to go was the high school to turn in paperwork for a dance clinic my eldest daughter wants to attend. As I walked the halls, I felt like I was back in school myself. Everyone staring, whispering. I suppose I should also mention that I was wearing a bleach-stained shirt and Crocs. So not cool.

I dropped a small fortune at Sam’s Club. I wish I could blame Down syndrome, but I can’t. I blame stress. I also blame the skunk stench at my house. I needed to clear my nostrils so I shopped as long as I could. It worked! My nose felt much better! Unfortunately, I can’t say the same for the people around me. Remember the whole antiperspirant thing? I’m pretty sure the skunk smell is also stuck in my clothing.

It’s now 11 a.m. and I realize I’ve got a lot of work to get done. Laundry, dishes, more laundry, more dishes and I suppose I should also fit in a shower. Why am I still sitting at this computer? I can’t blame Down syndrome. I can blame life. While I know I should get some stuff done, this pile of words is the only thing bringing me pleasure at the moment. It allows me to forget about the smelly dog in the kitchen, ignore the fact that Willow’s runny nose might abruptly end her nap soon and dream about the good times. Because, when you have a child with Down syndrome, there are many.

Sure, life is rough. But Down syndrome is not to blame. In fact, Willow’s extra chromosome almost always gives me reason to smile. Like today. Amid the madness, Willow cruised along the couch for the first time. It’s something she’s been working on for months, and today she finally did it on her own. She was trying to get the container of yogurt I put on the other end of the couch. She got it! And, the yogurt? Well, it went all over the couch. Figures.

October is Down Syndrome Awareness Month. If you’ve read this far, I’m hoping your eyes have been opened to the fact that Willow’s diagnosis is not the reason for our hardships. Everyone has rough patches. Everyone has challenges. Life can beat us down, stomp on us and spray us full of stinky stuff, but that’s life! Blame luck. Satan. Skunks. Whatever you want! Just don’t blame Willow. Her 21st chromosome has definitely made our lives busier and has taught us more about the medical world than we ever wanted to know, but I can honestly say I wouldn’t change a thing. Willow is awesome. Willow is perfect. And, Willow is the only reason I smile on this stinker of a day.

Follow this journey on The Mighty Willow.

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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10 Things to Know About Having a Child With Complex Medical Needs

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My world is the complex, chronic side of parenting. Here are 10 things I wish people knew about having a medically complex child. Hopefully if more people can understand these points, our challenges will be a little easier.

1. Our kids are still kids and need to be treated as such.

Kids with complex chronic issues usually have a lot of equipment and a team of caregivers. When we enter a room, it’s obvious our child has severe health issues. Unfortunately this is intimidating to a lot of people. They don’t know what to say to us or how to approach us. In many cases (depending on where we are), people have never seen a child like ours. Instead of treating our kids like kids, they get treated like patients. Our kids are still kids. They may need to modify the environment, but they are still kids. They like silly things like cartoons, knock-knock jokes, etc.

2. We do not want or need to be pitied.

We realize if you haven’t experienced our world, your initial reaction may be one of shock. The first thing that may come into your head is “oh my gosh, that is so sad.” We are not looking for pity. We have our moments, but most of the time, we’re trying to make the most and best of things. See our kids for what they can do. Don’t pity us for what they can’t.

3. We try hard to stay positive.

We try hard to keep a positive spin on things, but this can backfire. When our daughter, Casey, got really sick and we started to plan her Make-A-Wish, people were confused and caught off guard. They thought things were getting better because we didn’t share that side. Now we try to let our family and friends know when things are bad, but we still try hard not to dwell on those details. We don’t do this just for our family and friends; we do this for us, too. If all you focus on is the negative side of things, it can consume you. We have to stay positive.

4. Don’t assume you know our story.

It’s easy to judge others when you’re not walking in their shoes. Just because my child doesn’t express joy and happiness the same as others doesn’t mean she’s not happy or that she’s suffering. Casey doesn’t have the physical ability to smile or laugh, but to all those who take the time to know her, she expresses joy in many other ways. She may be having a rough day when you see her, but it’s just a bad day, not a bad life. Don’t assume you know everyone’s story just based on what you see at first glimpse. There is so much more to all of us, regardless of ability.

5. We’re exhausted — all the time!

Many of us have help, but even with help, we are on 100 percent of the time. For example, people who provide us with help might get sick, so it’s hard to plan or commit to things because we know at any point we may have to change plans. On occasions where we do go out, we have to be on-call and ready to get home at a moment’s notice (our daughter can go from great to devastating in minutes). We have to forego sleep, we have to wait to get our own health issues handles and we have to pass on that evening out. I used to fantasize about going on fancy trips to exotic locations. Now I fantasize about sleeping through the night and maybe getting a shower. My dream vacation now could be my own bed.

In addition to being tired all time, we may smell bad. We get covered in all types of bodily fluids throughout the day, and depending on our child there may not be an opportunity for a shower for days. We do our best to shower before going out in public, but if you “pop in” we may be smelly, our clothes may be dirty and there is no promise on how the house will look. Enter at your own risk.

6. We see you.

Imagine that every time you enter a room, everyone in that room stops what they’re doing and just watches you. That’s our life. We get used to it, but we are always aware of it. We carry a lot of equipment, our child isn’t quiet and there is usually me and a nurse (sometimes even more people with us) — we’re going to get noticed. We know most of the time people stare out of curiosity. There are a few people who judge and say ugly things, but most of the time people are just curious. I try to engage with people when I see the look on their faces, and I try to be approachable. I welcome questions and love to share our story. There are times I’m in a rush or it’s just a bad day, but most of the time, instead of staring, say hello.

7. We live in constant fear that today may be our last.

Medicine advances every day. There are more and more kids surviving diagnoses who previously did not. For many of us with medically complex kids, our children were not expected to survive birth, their first year, etc. We go into the “borrowed time” category early in our journey. This means we live with the constant reminder that any day could be the last day we have with our child. Each cold, each new diagnosis, each setback may be the one that takes our child. The upside of this is that we see each day as a gift, and we do our best to make them count. It takes a toll on us, though. Knowing we might outlive our child and that every day could be the last is a hard reality to face.

8. We still have hopes and dreams.

Even though we have no idea how much time we have (days, weeks or years), we have a lot of hopes and dreams for our child. These are not the same hopes and dreams that we had before we knew our child has complex medical issues, but they are just as real and just as important. Before we would dream of our child hitting developmental milestones, graduating high school and going to college, getting married, etc. Now our dreams are a lot different. Now we dream we will see another birthday, we will make it through the year without a hospital stay, we won’t have to fight with the school, insurance, etc. to get the services our child needs, that our child will have real friendships and relationships like every other kid, that our kid will be happy. Each year we see another birthday is a huge deal for us. For many families like ours, birthdays are big celebrations. It’s not just another year older — it’s another year gifted.

9. It can be dark in our world, and we need light — not more darkness.

When you’re talking with a parent of a child with complex issues, if they seem to be in a dark place and not able get out of the funk, you can help. We need light. If we look for support and are met with negative feedback at every corner, it can be hard to get out of the dark spot. We need people who celebrate life and can see the positive (regardless how small) in our situation. We need people to remind us of the good stuff. Or if you can’t help us focus on the good stuff, at least don’t encourage us to wallow in our darkness. Help take our mind off things. Tell us about a funny thing that happened at work, remind us of a great time we shared, etc.

10. We really don’t want to ask, but we need help.

Not everyone likes to ask for help, but we all need help, regardless of ability. It took us years to get to a point where we were ready to have healthcare providers come into our home. Once we did, we kicked ourselves for not doing it sooner. It took us a long time to accept offers from friends and family to bring us dinner and help with errands as well. We eventually realized they weren’t offering help because they felt they had to, nor did their offers mean they saw us as burdens. They offer to help because they want to. Accepting this help was good for all of us. It was a way for people who love our daughter to be able to do something, and everything they did was one less thing we had to worry about. There are so many ways you can help families like ours. We may not accept it at first, but please keep offering. Meals, errands, just sitting with us and listening, coffee (coffee is huge, especially when we’re in the hospital), help with chores around the house, picking up the kids from school, walking the dog… the list goes on and on.

We’ve been fortunate to have amazing family, friends and community that support us and Casey in so many ways. We really hope that by sharing insights like this, we can help other families like ours and their communities. The bottom line is that we are human just like you, our kids are kids and we are all in this together. Please don’t judge us; please don’t dismiss us. With help and understanding from our community, our days are a lot easier.

Follow this journey on CaseyBarnes.org.

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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When You Look at but Don’t See My Daughter With Down Syndrome

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October is Down Syndrome Awareness Month. What does “awareness” mean to you?

A vast majority of folks are “aware” that there are people with Down syndrome in this country. How many actually are empathetic? How many would have an individual with Down syndrome as a friend? As an employer, would you hire someone with Down syndrome?

That’s awareness, to me. It implies so much more than simply identifying physical characteristics or intellectual abilities.

In my memoir of “Jillian, An Uncomplicated Life,” I emphasize the need for us to “see” our fellow human beings, rather than “look” at them. Seeing demands engagement and empathy. It is active. Looking involves judgment. It is passive. We look at TV.

Seeing isn’t just needed for awareness of people with Down syndrome, or with any intellectual or physical disability. It’s a basic civil right. Think of the potential we’ve wasted in this country over the centuries, because we looked at people and didn’t see them.

Our whole effort in raising Jillian was in having her seen. It’s why we held her to the same standards and gave her the same responsibilities as we did her older, typical brother. It’s why we demanded she attend regular-ed classes in secondary school, and why we encouraged her to pursue extracurriculars, such as dancing on the high school JV dance team.

Don’t judge our daughter on what she looks like. See her for who she is.

Those who have taken the time to see Jillian have been rewarded with the most loyal and least judgmental of friends. Employers who have hired her have added a dependable and enthusiastic employee.

As evidence, I offer Jillian’s wedding. Of the 120 people in attendance, at least half were simply friends. In my toast to Jillian and Ryan, I thanked everyone for coming. I said that in ways great and small, everyone who was at the ceremony had something to do with Jillian getting there. It truly takes a village with our kids with special needs.

To all those folks — who love Jillian, have befriended Jillian and taken the time to see Jillian — happy Down Syndrome Awareness Month. You are truly aware. I’m confident your awareness has been rewarded by the friendship of the nicest person I know.

Paul Daugherty is the author of “An Uncomplicated Life,” a memoir of raising Jillian. It’s available on Amazon.com and on Paul’s website, uncomplicated.life.

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What I Want Specialists Working With Our Child With Special Needs to Know

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Dear specialists working with our child with special needs,

Ever since the birth of our son, we have lived in a grey zone. Vague answers, looks of uncertainty and lots of shrugs.

No issues regarding our baby were ever found in a “What to Expect” book. He fell off the milestones chart by the second month. Even seemingly simple questions were met with an “I don’t know what to tell you.”

We learned early on that we had better buckle up and find the answers ourselves. We became experts on our son.

Over the years, we have tested and settled on adequate meal solutions, sleep remedies and medical alternatives. We’ve fought for services, funding and rights. We’ve devised an educational plan to suit his needs. We’ve knelt by his bedside sick with worry when there was no explanation, and when the only thing we could give was our presence.

All of it was done with unconditional love and hope for our child.

Along the way, we have never received the vote of confidence we expect from professionals. We’ve never been handed the reassurance that things will be OK.

You cannot imagine what it’s like to live with endless worry and uncertainty while receiving zero support for it.

Please understand we are logical parents. We know you have to cover your professional behinds by carefully crafting what you tell us.

However, there is something to be said about an outsider giving parents a pinch of hope when we are void of solutions we fought so fiercely to find ourselves.

We know life cannot offer guarantees, but I believe it’s OK to occasionally utter a little white lie in an effort to comfort and encourage us to keep going. Sometimes one black or white statement will be enough to take us out of grey for weeks.

We’re tired of being grey.

Grey is that zone where no one really sees you because they don’t know what to do with you anymore. Instead, they keep passing the buck from one professional to another until we finally throw in the towel to run from red tape.

Grey is the sleepless nights where questions are launched into the darkness knowing there may never be answers.

Grey is where friends stop calling because your stories are too much to handle over dinner, and the last thing anyone needs is a dark cloud lingering over their linguini.

Grey is unfamiliar and so far removed from your reality that even you falter when we ask, “But will it work? Will it all be worth it in the end?”

Yes. Please, just whisper, yes.

We are tired of living in the grey. We’re tired of being tossed about from one file folder to another, from one person’s desk to another, from one unknown to another.

We’re just tired. And you coming into our home should not add to the grey tones. If we open the door to let you in, we search your face for light. We look for the hint of a rainbow.

Please don’t disappoint us.

We count on you.

A version of this post originally appeared on Gabriella Volpe’s site.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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.

Lead photo source: Thinkstock Images

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