To My Mom, 5 Years After the Injury That Paralyzed Me

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Dear Mom,

They say moms are always there for their children. As much as I wish that statement were true for everybody, I’m fortunate enough to have it be true in my life.  When I think about you, Mom, I think about how tough, stern and responsible you are. Since the day I was born, you’ve always wanted the best for my older sister and me. You raised both of us as a single mom, which is challenging enough on its own.

Before I was born, you two lived in Elizabeth, New Jersey. When my sister first started school, you drove 20 minutes to Colonia (the opposite direction of where you worked at the time) because it had a better school system than Elizabeth. That meant an extra 25-minute drive to Jersey City (passing through Elizabeth on your way) to go to work, then picking her up at Grandma’s house in Colonia after work. You sacrificed and did that every day to make sure she had a better education.

You would sacrifice anything for your kids. As a young boy, I learned about committing myself to something and seeing it through from you. I loved to hang out with my friends after school and play in the park, but I was also signed up for Pop Warner football. Honestly, I always thought I was too good for practice and only had to show up on a game day. But you took that thought right out of me when I told you I wanted to hang out with my friends instead of going to practice. You would put me in the backseat of the car, bring me home to get my football gear and rush me over to practice so I wasn’t late because you left work early just to get me there.

You were definitely one of the loudest fans at the game. Every time I broke out on a long run, you’d chase me up and down the sideline, running with me like you were about to score a touchdown during my Pop Warner football games. All of the other parents loved it, and they knew when I broke for a big run to look out for you, too.

After my injury five years ago, you had a choice to make: Either let me figure out things on my own after being paralyzed, or take control of the entire situation and make sure I had the best of everything. You chose the second option, which meant you couldn’t work. It meant you sleeping on a tiny cot for five months at the Kessler Institute in West Orange, New Jersey, which to this day leaves you with aching back pains. You have to deal with my nurses, make sure all my delivered medical supplies are correct and on time, and take me to therapy, speaking engagements and radio shows — all while trying to live your life.

I remember after I first got out of Kessler, when I was living in Jackson, you wanted me to hang out with my friends, so you drove an hour up north at 11 p.m., took me to the bar and went to your house 20 minutes away in Avenel. You waited until I called at 3 in the morning to pick me back up, drove an hour back down to Jackson and got me ready for bed. You really tried your best to help me adjust to our new lifestyle while also letting me enjoy myself as a young 20-year-old.

You’ve dedicated your life to helping me be great and be the man that I am today, and I cannot thank you enough for everything you’ve done for me. Without you, I don’t know what I would do because you make life so much easier. We do argue about 35 times a day about every little thing, especially because I believe I am a grown man. (Ha ha!) However, I do know at the end of the day, you will always have my best interest, and I can’t ask her for anything more.

Thank you for everything you do for me, Mama Dukes. I love you.

Text “LeGrand” to 20222 and donate $5 in honor of #FiveYearsForward or visit TeamLeGrand.org to join the team. Together, we can make a difference.

The Mighty is asking the following: Write a letter to someone special in your life. What do you wish he or she knew? How has he or she made a difference? 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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24 of the Most Ridiculous Questions Asked About Disability

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People with disabilities or other health conditions are often unfairly subjected to ridiculous questions. Even when loved ones, colleagues or passersby have the best intentions, it wouldn’t hurt to stop and think for a moment before asking a question that may turn out to be embarrassing, uncomfortable or even hurtful.

The Mighty asked our readers for some of the most ridiculous, silly or outrageous questions they or a loved one have been asked.

Here’s what they had to say:

1. “You’re going to get that fixed right?”
Said to my husband while grocery shopping with our baby [who was] born with a cleft lip. They clearly had a guardian angel protecting them that day as I was out of earshot.Lena Kotler-Wallace

"You're going to get that fixed, right?" -- Lena Kotler-Wallace

2. “What’s his genius?”
Asked (in a gushing voice) about my ASD son — Carole Anne Trisler

3. “Why do you bother doing stuff if you’re in pain?”
This one ticks me off because what is the alternative? Would you like me to do nothing for the rest of my life? — Alana Schuurs

4. “Your son doesn’t look autistic. Are you sure? He seems smart!”
Oh, how I want to vomit when I hear this… — Amanda Lillian Wolfe

"Your son doesn't look autistic. Are you sure? He seems smart!"

5. “Why is your daughter on a leash? Does she bite?”
Would you like to find out for yourself?’ — Kathleen Mireles

6. “How can you walk if you have spina bifida?”
Spina bifida can be surgically fixed and every case is different. — Fawn LeMay

7. “So you chose to have her?”
Asked about my daughter with Down syndrome. I’d explained we had a prenatal diagnosis and she seemed horrified. — Candice Waite

"So you chose to have her?" -- Candice Waite

8. “Oh my God, are you related to this other person in town/oh, I also know a person, friend of mine, etc., who also has XYZ condition/disability/difference.”
— Chris Amor

9. “Well what’s their (referring to individuals with Down syndrome) life expectancy?”
When I was talking about how I worried my child without a disability might some day feel responsible for my child who has Down syndrome because my husband and I will be gone, the person asked [this question.] It actually caught me off guard and I started to cry, but I did respond that his life expectancy is 60 or greater. The life expectancy of individuals with Down syndrome has greatly improved more recently and I hope it continues to keep increasing, as I want him to live a long healthy and happy life! — Lilly Capecci

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10. “What are you going to do about her?”
Well I thought I’d just ask the nearest dog shelter to pick her up…  — Nikki Charleston

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11. “Why can’t you just pick the piece off that chromosome?”
My son has 11q trisomy, which is an addition on the long arm of his 11th chromosome. –– Paula Lathrop Kockler

12. “Will he grow out of it?”
My son has Down syndrome and autism. I don’t think that’s going to ever happen. — Jennifer Roldan Delligatti

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13. “He’s OK now right?”
Um…. he’s alive and here. He’s more than OK. But yes, he has cerebral palsy and it’s not a tragedy. —  Betsy Pilon

14 & 15. “Is someone here with you?” and “Are you really their father?”
To my wheelchair-bound husband when he was at the mall with the kids. — Amy Namola 
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16. “What kinds of foods did you eat when you were pregnant? I’ve read a lot about diseases you can get from food.”
From a stranger at a park while our kids were playing (mine has muscular dystrophy).  — Betsy Ford

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17. “Will he learn sign language?”
Um, no? My son is blind. — Jessica Caromile

18. “Is she only ‘half Down syndrome”?
— Lee Corpus Ulinskas

19. “What’s wrong with her?”
Tell me all that’s right with my kid. Ask me about her health. You can even ask why she wears leg orthotics. But don’t ask me to tell you my child is wrong.
— Kimberly Davis-Morgan

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20. “Why do you have arthritis if you are young? Only old people get that.”
Yeah, would be nice if that were true… — Alana Schuurs

21. “Aren’t you afraid that your doctor will think you are faking it?”
Said to me by a nun who asked if I want holy communion. I was in the hospital, one of many times, to help treat daily migraines. I was able to take a shower that day, fix my hair and put on a little makeup. Apparently, having a chronic condition means you are supposed to look like crap all the time. — Elizabeth Buege-kuehnle

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22. “Down syndrome? How long has she had that?”
Umm… since conception. — Johanna Hirons Radziwon

23. “Is she slow?”
No, actually she is probably smarter than you. Her brain just works differently. — Kerri Lewis Brock

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24. “Can I have a photo with you?”
— Chris Amor

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When a Theme Park Employee Questioned My Child's Special Needs

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My daughter, Addison, is one of the millions of kids that has an invisible disability. At first glance, and even at 10th glance, you probably wouldn’t know that she has low vision and has trouble seeing the world around her. She doesn’t use a white cane and doesn’t have a guide dog. But she still has the disability. Whether others around her know it or not.

Sadly, because of the infinite number of stories on social media, I know that many people who also have invisible disabilities are often shamed for not being special needs “enough.”

There are admonishing letters written about using handicapped parking spaces, nasty words to parents about their kids’ “poor” behavior, and disrespectful comments thrown around in restaurants, offices and movie theaters.

But by some miracle, my daughter hasn’t ever been exposed to this discrimination because she isn’t special needs enough. Until last week.

We were at our family’s favorite theme park, and we always use their special access pass given to people who need extra help. Each time we visit, we explain our daughter’s genetic disorder to justify why she needs the extra assistance. The pass is always handed over with a smile. But not this time. This time we encountered Justin. And Justin just didn’t get it. At all.

I brought Addison up to the guest assistance counter with me because we actively teach her to self-advocate. To ask for help when she needs it. To show her that it’s not only OK to ask for help, but it’s OK to accept it, too.

But Justin decided that since Addison was accompanied by able-bodied people, she shouldn’t receive additional assistance.

Oh, Justin. You just messed with the wrong mama.

I smiled bravely in front of Addison and I re-explained that we get this assistance every time we come. I reasoned with him and asked for help again. He just repeated that he didn’t see how her needs would be helped by their services.

So I cussed at him. In my head. I told him what I thought of his smug, canned, non-compassionate little self. In my head. Addison was watching my every move.

I did the only thing I could do with my daughter still standing there with me. I re-explained, reasoned and asked for help again. With a forced smile.

As Justin started his monologue again about how he couldn’t help us, I sent Addison away so I could speak freely. Now I could tell Justin that he was discounting my daughter. Discounting her genetic condition and her low vision. Discounting her need for assistance. And honestly, he was just pissing me off. Because now Mama Bear had been poked too many times. Do not poke a Special Needs Mama Bear, Justin.

And as I stood there for an unreasonable amount of time trying to explain that not all disabilities are visible, something rare happened. A super angry Papa Bear showed up to talk to Justin.

You see, my husband rarely gets involved in things like this. He’s the calm one. He brings me back to my calm place. But not today. Today he came to do battle for his daughter. He came to deal with Justin. We requested to talk to Justin’s manager and then that manager’s manager, each time retelling our story. Our daughter’s story. And how some disabilities are invisible and there should not be a requirement to prove she’s special needs enough.

It all worked out in the end. An hour later. Of course Addison could have the assistance she always gets. Of course they were so sorry for the misunderstanding and the inconvenience.

We got what Addison needed to access the park, but as my husband and I walked away we both felt sick to our stomachs. My hands were shaking and I felt beaten down. It is such an intense response having to fight for your kid. Because not only did Justin discount my daughter, he discounted me. Ignored me. Like my words to explain why my daughter is more disabled than she looks was not good enough for him. And who are you, Justin, to decide whether my daughter is special needs enough?

Instead of Justin making my job as a parent easier, I had to explain to my 8-year-old that sometimes when you ask for help, you won’t get it. Sometimes people aren’t kind. Sometimes people are crummy.

But it also taught our daughter something else: Her parents will always be there for her. We will stand up for her and speak up for her until she’s able to do it herself. When Addison saw us speak up for her and for what she needs, she stood up a little taller. Because we stood up a little taller.

And while I hope she won’t encounter many more Justins in the world, sadly I know she will. That’s life. But she now knows that when she does, she’ll have back up. She’ll have us. Mama Bear, with Papa Bear at her side.

And that’s a good lesson for any kid.

Follow this journey on The Wise Owl.

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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People With Disabilities Reveal the 'Stupidest' Questions They've Been Asked

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Unfortunately, for some reason, people think it’s all right to ask people with disabilities stupid questions.

In the video below, released by BBC Three, several people with a variety of different disabilities discuss some of the worst things they’ve been asked. The questions range from the silly — “Can you get better?” — to the rude —  “How do you have sex?” — and finally, the absurd — “Can you hear under the water?”

Watch the video below for more examples of stupid questions people with disabilities have been asked: 

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This Could Change the Way You Find Handicap Parking Spots

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Soon, you’ll be able to find a disabled parking spot anywhere in the world in a matter of seconds.

While parking spots for people with disabilities exist all over the place, until now, no specific, universal database allowed people to quickly and easily find the closest disabled spot. A company called iParkomat has developed one that will allow users to both register and report disabled parking locations nearby using a smartphone or computer.

All users have to do is enter an address on the website to immediately get a list of the disabled parking spots nearest to them. It will also tell the user whether the parking space is free or requires a fee, and if it’s available.

See a video on how to get started on iParkomat below:

IParkomat was originally designed as a place for people to find or rent out their parking spaces in crowded cities with limited access to affordable parking. The website still does that, but its latest update includes the secondary feature — finding disability-accessible parking.

IParkomat is free, but to expand and improve the database, the company needs your help. It’s currently encouraging users to register disabled parking spots on the site.

See how to register parking spots on iParkomat:

For Hirsh Sisodia, Head of U.S. Business Development for iParkomat, the disability initiative is a cause close to his heart. Sisodia, based in Philadelphia, has a family member who, after an accident, is permanently disabled.

“I know [transportation] is a struggle that he has had to go through, and his family has had to go through, and that millions of people not only in America but all over the world have had to go through,”Sisodia told The Mighty.

To begin registering parking spots or to search for ones near you, visit the iParkomat website.

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To the Well-Meaning Stranger Who Can't Imagine Living With My Disability

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Dear Well-Meaning Stranger,

You noticed me in the spice aisle at our local grocery store. You observed me doing things a little differently due to my disability. While I enjoyed our quick chat, I feel I must share something with you. When you say, “I could never do that,” I don’t hear a compliment. I hear your fear of being like me. It’s OK! I’m not offended. I know you mean well. I realize it’s hard for you to imagine yourself living with my disability. I know you believe it would be “just too hard” for you. With this letter, I hope I can help ease your fear.

First I’ll be transparent and tell you it is hard at times. It can be incredibly frustrating when you aren’t able to do something so many people take for granted. There are moments of tears, moments of resentment and moments of anger. That does not mean it’s an impossible life to lead. It doesn’t mean the struggle isn’t worthwhile. I know we’ve only just met, but I truly believe you could do it, too — if you had to. If you had no other choice, you could in fact do the very thing you “can’t imagine.”

Not everyone with a disability was born that way. In fact, many people were in the same position you’re in right now, thinking, Oh, I could never do that. Then, all the sudden, there they were, living a new reality. I tell you this not to increase your fear but to help ease it. You really could do it. You’ve already done hard things in your own life. Remember those months of sleep deprivation walking around your house with your fussy newborn? What about when you had to step in to care for your aging parents while you were working full-time and taking care of your own family? Yes, the circumstances are different, but when you had no other choice, you just simply did what you had to do. You had to learn to go about your life in a different way. For a person with a disability, there are things like various kinds of rehabilitation, specific training to do things independently and countless resources available to help us find the best way to go about our daily lives.

Yes, there can be some grief. At times you might grieve the loss of certain things you used to do independently that now require modifications and assistance, or perhaps in some cases, you just simply aren’t able to do them anymore. Perhaps counseling, journaling or some other combination of things would help you through this part in the process of self-acceptance. You would keep living your life and find hope to keep going. You would still be able to appreciate things that bring you joy. You would still find beauty in this new life.

This life with a disability is worth living even if it looks — and sometimes is — hard. Honestly, most of the time we are so engaged in the everyday, ordinary business of living our lives that our disability is not our main focus. We celebrate victories and birthdays, and we embrace all of life’s good things. We’re not dwelling on the hard parts. We’re not stewing in the anger or resentment. We are going about our day and doing the best we can.

So dear stranger, you truly could do it — if you ever had to.

Sincerely,

Person With A Disability

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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