A brief look at the world of disabilities
Quiet battles are being fought, almost daily by parents advocating for their children with special needs. I see this during my daily activities in support of the disability community. I am a board member for Arizona Center for Disability Law, webmaster for 4 Paws for Ability and two other nonprofit agencies that support the needs of people with disabilities.
Adding to the stress and frustration in their efforts to find the best quality of life for their special needs children, parents are constantly confronted with phrases like, “Oh, you poor thing!” “How difficult it must be to take care of your daughter,” “My neighbors have a child with Down syndrome, and they will always have that burden with them,” or “Autism? Of course, you know your son will never be able to be a doctor or lawyer.”
But I see much more. Often parents with a passion to ensure that their children have the best possible quality of life are also full of joy, laughter, and to encourage their children’s ability to contribute as much as possible to home and society. These parents and caregivers are determined to give their special children the largest amount of independence possible. Yet, these parents and caregivers are met with great resistance by people who doubt their ability to make a difference in their children’s lives.
“More than anything, we want them to be happy!” says the mother of twin toddlers with a number of physical challenges. “We don’t want fear or autism to control their lives. We want them to do everything everyone else does. They deserve to experience being independent…to be able to explore this world…and not see their situations as curses but just being on a little bumpier road.”
“I want them to know that we as parents have given them the ability to grow. They must know that we have never held them back or felt sorry for ourselves or them. Or assumed they couldn’t do something and didn’t try. I am not one to think negatively. I will not put a limit on what they can do!!! It’s up to them, and I will give them all the support they need to get to THEIR DREAMS!!!”
As I began to research and write this article, these words popped out from a book I was reading,
…we must not be the prisoners of words…it is very weak to be swayed by a mere word…by a categorical imperative imposed from without by those who do not know the inward nature, the full complexity of the case.
The Power of Words
Kerrie Kerr Simpson
Throughout my formative years, I remember hurtful comments that were made to me about my mother (Nancy Joy Kerr) with the assumption that my mother was “less than an adult or less than a parent” because she was the one in a wheelchair.
When I was about five or six, Mother and I were at the grocery store for our weekly groceries. A woman approached us, patted my mother on the head, and then said to me, “Can she talk?”
Sometimes adults (occasionally a schoolmate) would say things like, “Oh, you must not be able to go very many places or do a lot of things because of your mother’s handicap.” If I could muster the courage (due to my own shyness), I would say, “Oh no, my mother drives and takes us everywhere. We probably get to do more things than a lot of kids.” Then the person would say, “Oh my, she can drive?”
Then there was the time that Mom was traveling from Phoenix to a meeting in Washington D.C. (She was appointed by President Ford to sit on the Architectural Barriers Board.)
On the trip back, she had to transfer planes in Dallas, Texas. Usually, skycaps were very helpful during her solo travels.
However, the skycap who helped her from the first gate to her transfer gate did not say a word to her. He whipped the wheelchair around (with Mom in it) and began pushing her very fast down the path to the gate for the next flight.
Every so often he yelled to other travelers, ‘WATCH FOR CART!’ When they arrived at the departure gate, he parked her in a corner—facing the wall (like a piece of wheeled luggage) and left, without a word. She did make sure he got his “come-upins.”
Even with these incidents and many more that aren’t quite as colorful, my mother had a very positive outlook about her circumstances. She made opportunities out of her circumstances. She used the characteristics of her “disability” to create new abilities benefiting herself and others in many ways. I think that people with disabilities and parents who have completely accepted and even embraced the characteristic of a particular “disability” often do the same.
Recently a woman spoke to me when I was out walking with my son, Trapper, and his Autism Service Dog, Zion. As we visited, she said, “I’m so sorry…it must be such a burden to care for a child with Autism.”
I want to go on record that no matter what you think or how our life might seem to you, our child has never and will never EVER be considered a burden. Trapper is a blessing, and God has given us this incredible gift that has taught us more about life, love, and family than imaginable!
We thank God for every moment with this amazing little boy. Granted, no matter how adorable he is, when he hits those high pitches, it sometimes forces me to laugh out loud. Sometimes that is needed!
Father Joe Sica
One of my favorite authors is Father Joe Sica. He has a compassionate, expressive, yet realistic take on life. In a devotional to be published in 2011, he says:
We arrive in the world with a face like none other, a voice that offers a new sound, and a mind that is entirely unique. Catch a glimpse of the person behind the mask: God’s child—a unique creation, splendidly crafted with authenticity, stunningly designed to live a joyful and wholesome life.
Comments from an expert in the field of Disability
The list is long and there are many conditions resulting in disability labels. Many labels. Sometimes it helps me to know that each of us has some type of problem or another—and that none of us is completely “normal,” whatever that is. And, in my view, each of us is unique and each of us has unique needs for living our lives in this world. In my view, all should be tolerated, accepted, accommodated, and respected (with the limitation that no one else be caused harm in the process, of course).
In many situations, using the term disability may be beneficial mainly from the standpoint that one is able to obtain accommodation for his/her unique needs. But, otherwise, each person has unique characteristics causing a different set of requirements for living: some need more than others.
But, again, all should be accepted and accommodated as just people with unique characteristics. If only the world worked this way, and it usually doesn’t, we all, out of the goodness of our hearts, would be perceptive and interdependent.
On the 4 Paws website, I keep a running list of illnesses and disabilities of those raising funds for service dogs. This list by no means contains all illnesses and disabilities, because not every family uses the 4 Paws for Ability “Make A Dream Come True” page to raise funds.
Since I started writing this article, the list (first posted on my blog on March 16) has increased. Generally, a child will have more than one challenge with which to deal. It now reads:
9 P Minus Syndrome. 17q21.31 microdeletion syndrome. ADD. ADHD. Adrenoleukodystrophy. Agenesis of the Corpus Callosum (ACC). Amylase deficiency. Angelman Syndrome. Apraxia. Arthrogryposis. Aspergers Disorder. Asthma. Ataxia. Autism. Batten Disease. Bilateral Club Feet. Bilateral Hearing Loss. Bipolar Disorder. Bone Disorder. Brain damage from birth. Cardiomyopathy. Carnitine deficiency. Cerebral Palsy. Chiari I malformation. Chromosome 18 q- Syndrome. Communication Disorder. Cortical Dysplasia. Crouch Gait. Developmental Delays. Down Syndrome. Dravet Syndrome. Encephalitis. Epilepsy. Failure to thrive. Fetal Alcohol Spectrum Disorder. Fine Motor Delays. Fragile X. Gastroschsis. Global Developmental Delay. Hearing Loss. Hydrocephalus. Hypotonia. Legal blindness. Idiopathic Infantile Spasms. Impulse Control Disorder. Infantile Spasms. Intractable Epilepsy. Ischemic stroke. Kidney problems. Laryngomalacia. Lennox Gastaut Syndrome. Low oral muscle tone. Mental Retardation. Metachromatic Leukodystrophy. Microcephaly. Mitochondrial disorder. Mood Disorder. Multiple Birth Defects Syndrome. Myoclonic Astatic Epilepsy. Non-Progressive Encephalopathy. Obsessive Compulsive Disorder. Ocular Motor Apraxia. Osteogenesis Imperfecta. Osteoporosis. Parkinson’s. Patent Ductess Arteriosis. PDD-NOS. Pertussis. Pervasive Developmental Disorder. Pituitary Brain Tumor. Phelan-McDermid Syndrome. Polymicrogyria. Post Traumatic Stress Syndrome. Profound ADHD. Proteus Spinal Meningitis. Pschomotor Retardation Epilepsy. Refractory Epilepsy. Respiratory Distress Disorder. Restless Leg Syndrome. Retts Syndrome. Myofacial Pain Syndrome. Scoliosis. Seizure Disorder. Sensory Integration Dysfunction. Sensory Processing Disorder. Severe Anxiety Disorder. Severe Intractable Seizure Disorder. Severe Motility Disorder. Severe Sensory Integration Disorder. Shaken Baby Syndrome. Short stature. Sleep Apnea. Speech Apraxia. Smith-Magenis Syndrome. Spina Bifida. Temperature Instability. Torticollis. Traumatic Brain Injury. Trisomy P Syndrome Tuberous Sclerosis. Ventricular Septal Defect. Vesticoureteral Reflux. Visual Processing Disorder.
We have disorders, defects, syndromes, and many more, including illnesses. But the question remains: are we a prisoner of words? And thoughts? Or do we respect the right to take one child at a time, from the moment of birth, and attempt to provide him or her with the best possible quality of life?