The Disability Gap


When Debbie wants to breathe, she does it with a respirator that is dragged along with her wheelchair. When she wants to speak, she has someone remove a bit of air from the tube, then you can hear her. When its time to eat, they attach her feeding tube. This is how Debbie spends the day. She never thought of herself as someone who would inspire you, yet I think she has more courage then those of us with all our faculties. Her eyes are bright, they open wide when someone new comes to visit, or someone suggests a trip away from the room she lives in. She has never looked for sympathy.

"What’s happened to me is planned, I was suppose to have these difficulties,” Debbie said, “It’s not bad, I am teaching others to accept me for who I am.”

You wonder where her courage comes from. But if you look around, she isn’t alone. At the hospital many women and men are using wheelchairs, some are blind, others deaf, some are without limbs, without any hope, or even friends. Some of the people around her, are suffering from any one of the Neurological diseases which could be placed in any of our laps. Although we still hear Debbie’s voice when things are hooked up right, some women can’t talk, or they blurt out words which make no sense, because of their disease. Men and Women from all over this world of ours are suffering with disabilities.

To the able-bodied observer, one finds it hard to see someone spend a lifetime in a wheelchair, or without hands or arms; a pencil in their mouth to write or use a computer. Healthy individuals tend to nervously change the direction of their gaze, as if to wipe away a moment of pain.

So many watched the pain and suffering of Christopher Reeve, but how many really got involved with research? How many people were willing to speak out for men like he was now that he has passed on, he once had a dream. Medical Research is a must for those suffering today, and the future of tomorrow.

We are real, Debbie is real like you, with hopes and dreams and promises. Debbie may feel a true reason behind her own disability, and the courage to go on regardless of changes in her life, but her disability does matter. The outside has ignored change. Debbie herself made a giant step in her attitude. Four years ago, before her disease, she was dancing at a wedding, she was driving, singing, hugging her nieces and nephews and the disabled went unnoticed. She never remembered her own sister in law in a wheelchair.

I say the disability rights movement is slow, unchanging and the attitude of people who never tasted change, sit back and dream, not them.

How often have we heard about those living with a disability getting mainstreamed? Now, we here only job cuts, less employment, no money to change the physical demure of a building to suit just one person. How often do you here someone say, we can’t invite her, or him, because our building or home won’t accommodate the chair, the respirator, another body, such as a caretaker, someone we don’t know. Attitude is pulling down progress for such people, like Debbie. How many times have Debbie’s friends searched for a suitable place for her to live among people her own age.


Being disabled is a challenge. My goal is to challenge the people who don’t understand the why and the where, the when and the how. When something hits home, the pressure is on, the mold you made from life becomes weaker, and cracks. What was once perfect has changed, what was beautiful has now turned ugly.

Who are the activists and advocates for the disabled? Are they only the ones who have lived, touched, grew close to a situation, or are they the ones who do not turn their heads when someone different smiles, or passes in their path.

I use to ride in a wheelchair, and I have gone from chair to cane, and now I walk; I recall a lady in downtown Saratoga Springs NY, during a block concert, shooing her children away from me, because I rode in a chair. My legs weren’t carrying me about. I still smiled at the lady, and her children. I couldn’t tell if her children had blue, brown or green eyes. I wasn’t sure about the face, or exact outline of their bodies, but they were there in front of me until a guardian pulled them clear of me. It was my first day out in the chair since rehabilitation. It made a lasting memory.

Strange enough, those of us who have used a wheelchair, or who have other disabilities, do not search for help, from a stranger. Most of the time we strive to be independent, make plans to get here or there, either alone or with a care taker. When such plans fall apart, and a wheelchair can’t get up a curb on its own, or a door is too heavy to open… it seems like people melt away, into corners, perhaps because we have been independent in the past. Help is a simple thing, if someone asked to help you with the door, you would smile, and thank them. Think about the person in a wheelchair, with machines attached to her chair, and the fear in eyes of strangers. It’s hard to get anyone to help.

Although many disabled people have found an Avenue of independence, those around them believe they can’t be living in a Wheelchair. Wrong. Wheelchairs are now designed to fit each and every need and bring independence. Living in a wheelchair is no longer a death sentence for the outside world.

There was a day and age when disabled bodies were invisible. Today, they are part of the main stream, people wheel around office buildings, up main street, into markets and restaurants. They are one of us, with some differences. When a blind person walks down a street, waving her red and white cane in front of her, she knows where she is heading. When someone uses his or her mouth to touch a keyboard to talk, they know what they want to say.

Many dependent people aren’t disabled physically. They have stickers for their car windows, but you can’t see what’s wrong with them. This doesn’t mean they aren’t disabled. The less you see, the more uncomfortable it is for those with disabilities. Although, those with feeding tubes and respirators may scare away the children, of adults who do not educate at home, they too are uncomfortable but you are aware of their misgivings.

I guess the most important thing is education. If you are able bodied, and stare at someone with a problem, never attempt to teach your children about the differences in life, and the progress made in the past to understand and accept people for who they are, not what they are, then its high time, as my Irish Mother would have said.

It’s another journey, a process, a reality. With all these reality TV shows, one should step in the shoes of those who have changed from one life to another. Adjusting to circumstance. Don’t end someone’s journey because they are different from you.

Although those with disabilities are learning, and have learned to accept and move forward, they still dream of the future, of the day when someone will come up with a cure for their disease. Some have stopped waiting, and do get discouraged, not everyone is a mountain of strength, which makes research even more important. Some people have courage enough to breathe with a machine, or get dressed in the morning. Some people call courage, survival. I call courage a lifetime ambition.

Nancy Duci Denofio

Healthcare Advocate

Information You Can Use

Pre-existing conditions: By July 2010, people unable to get health insurance because of pre-existing conditions will be able to use temporary high-risk health insurance pools in each state, giving them the opportunity to buy insurance that includes an annual limit on out-of-pocket costs. (Note: Most states are now preparing to meet this deadline; 18 have declined, asking that federal government handle the responsibility for their state instead.)

These insurance pools will remain in place until January 2014, when everyone will have access to health benefit exchanges in each state.

Retirees: Beginning June 1, 2010, the new Early Retiree Reinsurance Program will provide a subsidy to employers to help pay for healthcare coverage for some retired workers ages 55 to 64 who don't yet qualify for Medicare. Employers now providing health coverage to retirees must apply for the subsidy, which is designed to encourage companies to continue – and even to resume – coverage.

We’ll continue to keep you informed about key provisions of health reform as they go into effect. For more information, see the Kaiser Family Foundation’s website.

As I write about health care reform, I am waiting like many of you for the education which is lacking, without listing, without knowing when. I believe far too many families with hard ships due to sick children, sick parents, sick people they themselves are helping, need to know, when, what and where.

I am pleased we are making a step forward, but the steps are many, and the time is long.

Those with long term care needs do not have the time to wait, and I am hoping those dealing with this "signed" bill see the image of those suffering and who have waited.

I know a child, more then one, who sit with tubes, to breathe, to eat, and hopefully MORE RESEARCH and MORE AVAILABILITY to those findings will benefit these families.

Thanks for reading. Any comments are welcome.