I don’t know what it is like to feel my body failing. I’ve never been in a wheelchair. On occasion I may trip over a word or two, but I have never been unable to control the rate and volume of my speech. As short as I am, I have never viewed the world from the height of my friends’ hips. Walking is intuitive to me; I do not need to focus my complete strength and attention to coordinate my movements.
My children, however, experience all of these things, every day. I am watching my children’s bodies fail them.
I push the wheelchair uphill and pull against gravity going down. I help my children walk and translate their speech when others cannot understand. I see my daughter “walk” with her friends as they talk, but she is three feet beneath them, struggling to hear, unable to be heard. I recognize that some day soon, my children will depend on me for the absolute basics of daily function.
My children with Friedreich’s Ataxia have a different experience of the world; one that cannot be fully understood by a neurotypical individual. They know this; I know this. However, there are many ways, most of them quite small, that individuals can make life less a struggle for us and others like us. Now, far from home and the sole adult, I am hyper-aware of difficulties, and how simple acts by others can make a difference. I’d like to share four ways you can make a difference in the lives of those with disabilities.
1. Leave accessible toilets for those who need them.
Many children and adults with neurologic disease experience an urgency when they have to use the restroom. If they are alone in a manual wheelchair, they may struggle just to get to the restroom, much less open a door without an electric button; hold the door open; and wheel themselves through. Once in the restroom, they cannot simply rush into a stall and plop down. Instead, they need to find a stall that they can propel their wheelchair into, which has the grab bars they need to safely transfer.
In an accessible world, a restroom labeled, “accessible” would have more than one accessible stall, located near the door. Unfortunately, we do not live in an accessible world. Most often, the accessible restrooms are in the complete rear of the restroom. Often, the only infant changing table in the restroom is located in this one stall, encouraging mothers to use this restroom for themselves, and then take time to change their infant and let siblings use the restroom.
Even with the best planning, my children and I find ourselves, more often than not, waiting on the one accessible stall in the restroom, while a mom and her children take turns in the stall. If we are to use a smaller stall, it will mean I have to help them out of their chair and undress with the door open. If we wait too long, we risk an embarrassing accident.
I find myself heartbroken that dignity is at risk because we, and others like us, can’t safely use a toilet. I wish I could say that people see that we have been waiting and apologize, but they do not. I know those little stalls get crowded when you have small people squeezing in with you, but please, leave the accessible stalls for those who truly need them.
I am not angry with parents using these stalls, because at one time I was this mom. I believe most people simply lack an understanding. I hope my words will help others to understand, leading them to consider individuals with a disability before using the accessible stall.
2. Don’t stare, but please don’t pretend we don’t exist.
Recently, on a Christian radio station, they were discussing how hard it was to know how to treat individuals with “special needs” and how to teach their children to treat them. I was shocked. It didn’t occur to me that this question was still being asked. Let me clear this up.
Treat all people, regardless of appearance, speech, and ability with kindness, love, and respect. That’s it.
My children and I do not want to be looked at with sadness and pity, though we know the sight of hurting children breaks hearts. We do not want to be seen as an attraction or curiosity, though we know people are inquisitive.
The truth is, most of us do not mind curiosity and welcome the opportunity to teach others about our condition. Just ask. Let your child ask why my child uses the wheelchair. Give us a chance to teach him or her that sometimes legs don’t work. Respect the boundaries of those who would rather not share, though in my experience this is a rarity.
Don’t pretend we don’t exist. Don’t hurry your child away or turn your back. We know it can be uncomfortable. It is difficult for a parent to see someone’s child in a wheelchair, or with a bald head, and be reminded that we are all vulnerable.
But truly, we are no different from you and your children. We were healthy; the kids all walked; we had the same goals and dreams for our children as you do. We had never heard of Friedreich’s Ataxia and believed rare diseases happened to other people. Sometimes we still find ourselves not quite believing this can be our life, but we are here. See us; greet us; smile at us; recognize us just like you would anyone else in your path.
3. Talk to the individual, not to the parent/caretaker.
Of all the things my children have struggled with, I think this has been the hardest. Instead of speaking to my daughter or son, people look over the top of his and her heads and ask, “What is wrong with her/him?” On more than one occasion, exhaustion and frustration has overtaken me and I’ve answered, “It’s not their hearing.”
Perhaps the greatest cruelty of this disease process is that my children are intelligent and aware of what the disease is taking from them, bit by bit. They are thoughtful, and eager to interact with others, but their slurred speech and wheelchairs lead people to believe they are not capable of interaction and dialect. They speak over the heads of my children as if they are not even there.
My children know what is going on. They ask me, “Why do people think I am stupid?” They tell me the worst part of the disease is not the loss of mobility, but the way people treat them when they are in the wheelchair.
Talk to individuals with disabilities. Look them in the eye. Take a moment to sit down or bend down to eye level. Give my children and friends a chance. If you take time to slow down and listen to their slower speech, you will find minds that are sharp, fun, full of ideas, and eager to interact.
4. Don’t be afraid to help, but respect us when we say no.
Doors are one of the most irritating aspects of my current world. The buttons designed to hold the door open are often located next to an ashtray, demanding I push my child through a cloud of smoke to reach them. Often they are well hidden or even broken. I marvel almost daily at the doors in places like schools and hospitals, places that should be fully and easily accessible to my children but are incredibly inaccessible because of heavy, narrow doors.
I know we are all rushed. I know we are a society that values independence and fears insult. Believe me when I say you are not likely to insult us by opening a door. The greater insult is feeling as though the people behind me are tapping their toes impatiently as I hold the door open with one foot, hold a baby on my hip with one hand, and struggle to push a chair through with the other. We welcome the help. Bonus points for helping with a smile. A smile speaks volumes.
If we say we do not need or want help, please respect these boundaries as well.
We are not asking anything different from anyone else. We want help, but we want the right to be independent as well. Offer, ask, believe us when we say we can do it ourselves.
Small Acts Matter
I could be wrong, but I choose to believe that most people do their best to be kind, accepting and helpful. I believe that most of the difficulties confronted by those with a disability are encountered because others simply don’t know what it is like to live with a disability. The things I am advocating for are incredibly simple and yet radically difficult in our busy world: slow down; see us; make time and room for us; offer help and respect boundaries.
What I am asking you to do is unlikely to change the world, because, after all, they are small acts. However these things can change a person’s day, encouraging them; offering them more dignity; giving them a sense of belonging. On a given day, these are the things that leave me feeling hope for my children and restore my belief that the world is full of kind and wonderful people. These are the things that change my world.
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