For those who know me, I am back to using my wheelchair. I wrote this during the years I was still able to use a prosthesis instead of relying on my chair. I believe thie article would be a great one for my favorite Parenting Magazines, but I have yet to submit it to them. For the moment sharing it with you fufills my need to have it heard. Thank you for taking the time to read over this page and please feel free to e-mail your feedback to me.
There are many things that as parents, we want for our children. Being healthy and happy are top priorities, but as much as we might wish we could shelter our children from certain harsh realities of our modern society, we are unable to prevent them from being caught off guard when visually confronted with a person in a wheelchair, while out shopping, or renting videos, or other errands. As a disabled Mother of one rambunctious two year old, I can only say that whenever I am confronted with the soft voices of other people's kids during their distant, but important discovery of yet another way people in the world can be different from one another, I am sometimes moved to tears by the innocent questions they ask.
Even though I no longer use a wheelchair, my artificial limb, better known to some folks as a Prosthesis, is just as obvious to onlookers as the chair was. In my experience the worst people to deal with are the elderly, as they have had even less 'good' exposure to those disabled adults who are not only active, but raising families. There have been many times when older adults were discourteous and blatantly rude in their pursuit of answers to their curious inquiries about my condition. Normally I don't mind discussing it, but usually I like to choose when and where as well as to who I am recounting such personal information to and as a rule I am not comfortable in the uncertain setting offered at the grocery store, or the mall, but yet I am not going to return rudeness with rudeness.
It is a far better thing to patiently ignore anyone who crosses the invisible boundaries of what is and is not acceptable to ask a disabled person when encountered in public. It is my hope to help others through example of how to be instead of how not to be, so if I am approached by a child I smile, not too enthusiastically, but more then friendly enough to let them know I understand their curiosity. Curiosity is a good thing, but when a child sees someone like me, and is unequipped to handle it, I feel it is up to me to be a ray of hope, rather then appear to be a sad, unhappy person who is suffering.
Children have problems understanding the suffering of others and understandably wish they could do something for the sufferer. This is an admirable trait and through experiences like meeting a disabled man, or seeing a blind man with his trusty seeing eye dog leading him through the obstacles and keeping him safe, I believe the Physicians and Nurses of the future are born. The time to think about how to respond to this type of experience is before you're faced with it, because a snap judgment, or a quickly unthought-out reply could needlessly upset your child and cause unnecessary sadness.
If your child sees a potentially upsetting sight via a person who is disabled, it is best to deal with it out of earshot of the disabled person since everyone is different and not as well adjusted to their situation as I have become. It takes years to recover from accidents and sometimes, like in my case, a person can be so damaged physically that there is no chance for them to 'fit' back smoothly in society without being noticed. Before I became this 29 year old, well adjusted Mother of one, I was a disgruntled 19 year old, who was angry at the world and hated to have my disability brought up in any way. At a point where all I had lost was more upsetting for me then I could accept and try to be happy at still being alive.
It would be great if we could heal every injury and cure every disease, but realistically we have to accept that the price of all this 'high technology' to save lives can sometimes leave a person saved who is left permanently scarred and unable to get on living without intervention from others to help them find out what it means to be 'disabled'. Support groups exist all over the country for people of certain disabilities, to meet, exchange ideas and advice and to relate to each other. I believe this kind of interaction has helped me the most and I have tried throughout the ten years I have been amputee to be a shining example to others of how courage and the willingness to face the world can be rewarding.
As you are making dinner tonight the last thought on your mind is on what life must be like as a disabled adult, and nor should it be, but if your kids have seen a wheelchair or a person walking using a 'robot' leg and a cane, chances are that they are still thinking about the 'what ifs' long after they have lost sight of the person who made them think along those lines. Nowadays we have so much information at our disposal it only makes sense to arm our kids with the best understanding that we can give them, so if you had hang-ups as a child or young adult about the deeply disturbing issues disability can provoke in a able bodied person, then now is as good a time as any to evolve your way of thinking to include the ability to first identify how it makes you feel and then to deal with the consequence of feeling that way.
Dealing with our fragile mortality is almost a daily occurrence in many households and even though it is a deeply upsetting tragic event to have touching your life personally whether through a sick family member or the untimely death of a loved one, eventually we all must deal with the facts that the human body can suffer tremendous damage and sometimes still recover, it's the mind and spirit we must work harder to nurture in those around us. It is, after all, those differences between people that help us to become better, well rounded individuals who are unafraid to admit it is sad to see a person in a wheelchair, but also keeping in mind that they are at least out and about living their lives rather then hiding from view.
I believe a smile says volumes, just as the disapproving looks of onlookers can also communicate feelings of a negative opinion. It is wonderful for me to hear a parent addressing their child's concerns over my 'robot' leg and if I think a tiny response is warranted and the child is older, I sometimes venture a lightly worded answer to the question : "What happened to your leg?" I can safety say, "I had an accident and the doctors had to do it to save my life. Isn't this neat looking?" meaning my prosthesis and sometimes I go a step further, letting the child actually touch the prosthesis. There are some artificial limbs that have a 'skin' on them and unless you've a trained eye, they happily succeed at going about their business unnoticed.
But unfortunately not all disabilities are as easily dealt with as recovering from limb loss can be since the people affected started using available technology to improve their lives by using computers to design newer components and through the development of newer more durable and lightweight materials from which to fashion 'sockets' to the outer shell. When I was still in the hospital and on the Rehabilitation floor of the hospital, it was the last days I spent after 'the accident', I saw many kinds of disabilities, from paralyzed quadriplegics and paraplegics, to other traumatic injuries resulting from tragic accidents, that spoke silently of years to come of therapy, looming possibilities of future surgeries, and in some cases the sadness of a painful death.
The best way to handle explaining to a child what they are seeing is okay and nothing to be afraid of, is to be as kind as possible. If the person is using a power chair and looks paralyzed, tell them "That lady uses a power chair to get around. Isn't that neat? Like you brother's little power wheels machine. Only she needs it all the time." Leave the explanation like that. Let the child come to you to voice their concerns and take that opportunity to explain to them how sometimes things happen and there's nothing you can do about it except live with it.
If you present yourself to your child as confident that being disabled doesn't mean the end of the world and that those people who are disabled are still people, then your child will walk away feeling better about the world around them. Knowing that disability is out here makes the child more comfortable when it touches a family member in some way. My grandmother lost her leg to diabetes, and then her sister a few years later. Because of the exposure I had to both women in my family, I feel I was better equipped to deal with my situation then another person might have been.
God knows no one wants to see their child disfigured or injured through a tragic accident, but these things do happen and you can be assured that at some point in you child's life he or she will come across a friend or family member, who desperately needs to see their accepted by their family and friends after something happens to them, and the example you give your child about what disability means to you is one great gift you can give your child. Just taking the time to think about what your showing you son or daughter about "that man in the wheelchair," can have lasting effects.
A friendly smile from a stranger, especially a sweet young child, can be the best medicine a hurting soul needs in a time of confusion about themselves and their recent disability. Trust me, for the disabled, going out in public after recovering from whatever befell them, is a challenging experience and sadly, the way one gets treated in their first experiences back in the 'real world' can affect their attitude towards themselves and shape their self-image negatively. A disabled person needs the support of their friends and family, but even that isn't always enough. Sometimes just having a stranger tip their hat to you or grin and greet you is the best feeling in the world.
Just as watching a parent scold and chastise a child for their curiosity is heart wrenching. Children are naturally curios and I believe they should be rewarded for their thought out questions with an answer, not embarrassment or humiliation by scolding them in public. Taking a moment to help your child understand such circumstances as you may encounter, makes them more sensitive to others and helps encourage empathy. When a child thinks about that woman in her power chair, they may think of how she does things in her life. That is wonderful, because ignorance and fear have caused too much pain for the disabled for far too long. The children of today who ask questions, are part of an overall movement towards re-integrating society to its feelings and heart.
