Mother and daughter sitting outside together on a lawn.

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

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

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

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

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

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

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

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

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

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

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

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

1. Our child means the world to us.

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

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

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

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

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

4. We would love to have a “me” day.

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Follow this journey on Free Wheelin’.

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I am white. I am white as the snow on the ground. While white, I face ableism and sexism a lot, and it sucks. But I am white. I want to bring this up to discuss how I benefit from being white in my own marginalized community.

When I watch TV shows and movies about disabled people, it’s almost 100 percent white people. Mostly males, but definitely white females too. I see myself represented. I am more normalized to others; more people accept who I am. Tell me, can you picture a person of color with Down syndrome? How about an indigenous person in a wheelchair? Why is that so rare to see?

People see me as a little white female, so when I stand up and speak out about injustices I face, I am seen by more people as strong and powerful, instead of something like the ridiculous “Angry Black Girl” stereotype. More people are willing to hear me out and accommodate me.

I am not forgotten within my own community. In fact, someone like me is a poster child for disabled people. White, middle class, good special education program. I grew up with so much privilege, I’m oozing it. I can easily forget about my white identity and focus on my disabled identity because I am not constantly oppressed due to my race. These examples are just some of the benefits of having so much privilege within your own marginalized community.

As much as I benefit from this system, it’s not fair. It just isn’t. So let’s use some privilege and start talking about the folks of my community regularly forgotten, because my community will only be as free as our most marginalized. Now I refuse to say I can touch on the experience of these communities, nor will I ever completely understand because of my place of privilege, but hopefully I can open the floor for these people to actually speak on their experiences. I will bring to light some issues below:

When you are a member of the LGBTQ+ community and are disabled, a doctor’s visit can be very stressful. If a doctor is not sensitive towards your needs, like being in a wheelchair going through transition, you may not get the adequate care you need.

When you try to immigrate to countries like the USA and are disabled, there are roadblocks. You are legally allowed to be denied entrance if you even may become a public charge (relying primarily on the government for subsistence). As many disabled people know, not everyone in our community can work. Denying entry because of that is inherently ableist and only values traditional concepts of productivity in a person, rather than many other important traits like empathy.

Studies have shown a large disparity in the median age of death for people with Down syndrome based on race. If that doesn’t prove privilege, I don’t know what does. Down syndrome occurs across all races and economic classes also, meaning the less money your family/you have, the less likely you are to survive, and the disparity here is huge.

If you are a hijabi-wearing Muslim woman who is disabled, say from something like PTSD, you’re less likely to be taken seriously compared to someone like me. It’s like the color of my skin gives me more credibility. As someone who experiences severe depression, that bothers me. Sometimes my mental illness isn’t taken seriously at all, despite how much it can interfere with my life. The fact that women in general are taken less seriously, and especially women who are from further marginalized communities, really messes with me.

If you are person of color with disabilities, anytime you are stopped by police could be the last time you take a breath. Of course not all police are bad, but militarized police and police who aren’t trained to handle emotional outbursts, seizures, and sensory processing overloads, among other things, are a huge issue. Statistics show up to 50 percent of people killed by police are disabled, despite disabilities only making up 20-25 percent of the population. Most people killed are those with mental illness or intellectual/developmental disabilities, and disproportionately belong to more marginalized communities.

This barely scratches the surface of what it means to be privileged within a marginalized community. Every community needs to start recognizing their disabled members, and the disability community needs to recognize that many are privileged within it. Privilege is not a dirty word; it is a tool we can use to help further the most marginalized in our communities and our society as a whole.

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For the last several years, my time living and working on college campuses as a student and now administrator has led me to think of August as a time of new beginnings. The sight of new students beginning their college journeys makes me think of all I have learned, and all I am still learning, about living with a disability since I started college almost 10 years ago. In that spirit, here’s my best piece of advice for students with disabilities who are starting college: Tell your story — disability and all  — the way you want to!

It almost goes without saying that college will be an adjustment for everyone, but those feelings can be heightened if you are trying to navigate your disability in a new environment. As much as I had accepted — and even been comfortable with — cerebral palsy as part of my identity before I went to college, the process of helping classmates and professors understand what CP meant for me and to me was sometimes overwhelming. I learned three important lessons from this experience that I still try to live by today:

• Talk about your disability in a way that works for you. It’s always important to advocate for what you need with both friends and professors; however, you always have the freedom to talk about your disability as much or as little as you want. Only you know how your disability fits into your story — don’t be afraid to own it, and don’t feel like you need to either hide it or disclose information you are not comfortable with for the sake of the new people in your life. You will find people who are interested in embracing all of you for the great person you are!

• It’s not your job to make your disability OK for other people. While you’ll meet many people who appreciate and you for who you are and give you the respect you deserve, you may encounter people who use your disability as an excuse to be rude or unkind. Their ignorance is not your fault or your responsibility. Please don’t feel as though you need to minimize or justify your disability in an attempt to smooth things over. If someone on your campus makes you feel uncomfortable because of your disability, there are plenty of people, from your RA to your school’s office for students with disabilities who will be happy to offer you guidance and make sure you get the support you need and deserve.

• Remember — it’s a process, and that’s OK! Sometimes, especially in the beginning of college, my feelings about how CP impacted my experience changed by the day. Some days I would be able to laugh everything off, and other days I would take a friend’s innocent comment entirely the wrong way. My best advice for this is to be gentle with yourself and the people who care about you. Everyone has ups and downs regardless of ability, and that’s what makes life interesting. Do the best you can one day at a time. Learn what picks you up when you’re feeling down, whether that’s a Netflix marathon, chocolate, or a call to your mom, and don’t be afraid to treat yourself!

Like I said, the new school year can be a time for new beginnings. Remember that whatever your college journey has in store for you, you are more than capable of fulfilling your dreams. Good luck and have a great year!

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Thinkstock photo by Jack Hollingsworth. 

Being a student can be a demanding job. You have to wake up early, get to school on time, carry a load of supplies and books, pay attention to the content, and socialize. It’s a full-time gig. It’s no easy task, especially if you have a disability.

The pressure of engaging in everyday activities while processing your pain levels is very difficult. It can make it next to impossible to get through the day, let alone concentrate on the material at hand. There are a few things I’ve found to make this experience a little easier:

1. Always carry all your medication on you. You may feel as if it is a burden to carry around all your pills every day. Who wants to carry all those bottles all day? Plus, there are some days you don’t need to take them all, so why add to the weight of the extra pills? Yeah, but what if you need it? It is a lot better to keep them in your bag, locker, or car than to leave them at home.

2. Take your medication! It is important to carry your medications, but there is no point in doing so if you don’t use them. If you are able to recognize signs and symptoms of a flare-up of any sort, take your medication. Preventative care is important to get through the day. Some people feel judged (and are judged) when they are seen taking meds, but this is about your health, not about other people. It is much harder to battle the symptoms and the flare-ups once they have rendered you non-functional.

3. Let a friend and a professor/teacher know if you have any disabilities that interfere with your learning, or that require you to leave the room abruptly. Always keep someone in the loop in case you need help at any given point. The more you help yourself, the more they can help you.

4. Contact the administrative office and/or your professors regarding accessibility. Schools have accessibility learning offices or protocols in place for students who are disabled. The services include sharing notes and recorded lectures, as well as extended test times. Accommodations can be set up as needed.

5. Ask your professor if you can record the lecture if you prefer to do it on your own.

6. If it helps, doodle while listening to the lecture. Studies show that doodling helps the thinking process by connecting thoughts. Doodling is also a great replacement for words for those who are more visual learners. Replacing certain words with drawings that better explain a concept, or that are a better representation of the thought in question than a word, can be more beneficial to learning than writing.

7. Eat! Don’t skip lunch. Try to eat healthy snacks between classes if possible. It’s important to keep your brain and body fed so you have enough sugar and protein to get you through the day. Most people feel they don’t have time to stop and eat food, but you will only be more sluggish if you do not give yourself the break and nutrition your body craves.

8. Take breaks throughout the day to recharge. It is OK to sit alone quietly. It is OK to read a book during your break. It is OK to take a nap. It is OK to socialize. It is OK to work on your homework/pending work during your break if that is what you need to do. Do whatever helps your day get easier.

9. Do not compare. Do not look over to your left or your right to see what the person next to you is doing, or how far ahead or behind they are relative to you. They are not you, and you are not them. Everyone is different and has their own learning style and pace. This not only causes unrealistic expectations of yourself and others, but also depletes you of energy you could be using for other things. Comparison can create a snowball effect of depression and anxiety.

Self-care is number one. It is the most important thing you can do for yourself and for others. Focusing on what you need and having a support system set up in school is not only crucial to advancing in your career, but also a great tool to help you function with your disability. Eventually, things can become second nature and you’ll learn how to cope with similar situations outside of school.

Hope everyone returning to school finds this helpful!

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