Myths, Part 1

I've written several times in the past about people who speak to Ashley and then get frustrated because she seems to ignore them. I refuse to put a sign on her saying, "I am deaf", so I have decided to share some myths about deafness. You will notice that I left out the obvious myth - "People who are deaf can actually hear sometimes!"

MYTH: People who are deaf cannot use the telephone
Some hard-of-hearing people have enough residual haring to talk on the phone. People who are deaf often use a device called a TTY and a state relay system for phone line communication.

MYTH: People who are deaf are also mute.
It is incorrect to assume this. Some may choose not to use their voices if they think they will be difficult to understand or have inappropriate pitch or volume. In any case, terms like “deaf and dumb” or “deaf mute” are considered offensive today.

MYTH: Unusual sounding speech means a person has mental retardation.
Speech development depends greatly on one’s ability to hear himself or herself talk. For the person who is deaf, the foundation for learning speech is not there. It has nothing to do with intelligence.

MYTH: People who are deaf can read lips
Lip-reading is a skill that some deaf or hard-of-hearing people have. Others do not. Even with the best lip-readers, it is important to remember that only about 25% of speech is visible on the lips. Some words look almost exactly the same – for instance, the words “battle” and “paddle”.

MYTH: Hearing aids completely correct hearing loss
Hearing aids are assistive devices which improve hearing for some individuals. Hearing aids do not “correct” hearing. A hearing aid may enable a person to hear someone’s voice, even though she or he may not be able to understand distinct words. Just because someone wears a hearing aide does not mean the person hears normally.

MYTH: People who are deaf are not very bright of educated because they have not learned to talk or do not use proper English grammar.The primary language, or first language, of the Deaf Community is American Sign Language. English is a second language. Most deaf and hard-of-hearing people learn English usage and have speech training, but naturally enough they may find it easier to use their primary language most of the time.

MYTH: People who are deaf lead totally different lives from other people.
Deaf people are set apart by only one thing. As a former president of Gallaudet University once said, “Deaf people can do anything but hear.”

Coming tomorrow...myths about blindness.

Deep Breaths

Today, my every thought and prayer is with my friend, Lynnette and her beautiful daughter, Brooke. Brooke is scheduled for surgery today – a tracheotomy. A tracheotomy is a surgical procedure that creates a temporary or permanent opening in the trachea. Brooke’s tracheotomy will create a permanent opening and it will help with her breathing problems.

Brooke is only 9 years old and is dual sensory impaired (deafblind). She has been through a lot in her 9 years, but she has faced each challenge head on, and reigned triumphant in spirit. Her smile is contagious, and everyone around her can’t help but smile also. Her laugh is to me the laughter of angels – so pure, so honest, so happy.

There are no words to describe how difficult it is to be a mother and have to make a decision such as this. Brooke’s entire quality of life is going to change – some good, some not as good. Mothers already have so much to shoulder when it comes to raising a child, and it seems almost unfair that they would be faced with these kinds of decisions. But we are – every single day. The only way I can personally make sense of that is to believe that God knows that we mothers are strong enough and wise enough to handle the decisions.

So Lynnette and Brooke, today I will be praying – for a successful surgery, for an easy recovery, for Brooke’s understanding of her mother’s love through all this, and for Lynnette’s peace of mind that she has made the right decision. Both of you, take time to heal and time to grow even closer as mother and child. I love you both.

The tie which links mother and child is of such pure and immaculate strength as to be never violated. ~Washington Irving

Hope

Systems change – a term that is being tossed around by a great many government agencies and organizations that support people with disabilities. The term seemed to rise in popularity about 6-8 years ago. The first thing I noticed was that organizations which once provided a great deal of hands-on, individual support backed away from that support. They began talking the language of strategic planning, technical assistance, and outcomes. Families and people with disabilities were taken by surprise by this shift, primarily because they were given little or no explanations. An even more disappointing aspect of the shift is that in the 6-8 years it has been in vogue, I have seen no systems change.

In concept, the idea of systems change starting at the top of the service paradigm sounds good. In practice, it hasn’t been so good. However, trying to effect systems change from the bottom – a grass roots effort – is too slow and too draining for families and people with disabilities to sustain the effort for the length of time needed. I’ve found through my own efforts that sometimes litigation can effect systems change, but usually not on the scale that is needed. So what’s the answer?

I believe the answer is the development of an innovative, completely different model. I don’t know what that model is yet, but I had lunch today with someone who does. The ideas presented were intriguing. And even though these ideas will take some time and refinement, the difference to me is that they offer hope – hope for a meaningful life for my child, and many other children, with dual sensory impairments.

Until today, my week had been depressing and disappointing. I am facing the ever-present school and insurance battles. I am still struggling to raise my children well, and ensure that their needs are met. I am still worrying what the future holds for them and for other children with disabilities. But now, mixed in with the worry, the struggles and the battles is hope.

I will share more about this new model when the time is right. But that time is not now. Until then, I will be recruiting families who I believe are ready for a change, and ready to commit their time and energy to that change. If you are one of those families, and you have a child of any age with dual sensory impairments, please contact me. If your family is in need of hope for the future, and you want to work towards making that hope a reality, I need your help and am anxious to hear from you.

Thank you, Tim. I am excited about the future of the plans we discussed today, and I am ready to assist in any way I can.

My Worst Nightmare

Forty five years doesn't even begin to be enough punishment for this man.

http://www.cnn.com/2007/US/law/07/26/therapist.molest.ap/index.html

ADA Anniversary

Today marks the 17th anniversary of the signing of the Americans With Disabilities Act. On this anniversary, I believe we should evaluate the progress we have made and commit ourselves to continuing the fight for equality. Justin Dart, renowned disability rights advocate who passed away in 2002, is considered to be the father of the ADA. Below are his comments on the signing of this landmark legislation.


ADA: Landmark Declaration of Equality By Justin Dart

President George Bush signed the Americans with Disabilities Act on July 26, 1990, a landmark date in the evolution of human culture.

Throughout all of reported history until recent decades, people perceived as having significant disabilities have been treated as sub-humans. At worst they were killed or left as beggar-outcasts to die, at best they were cared for through subsistence welfare, out of sight and mind in institutions and back rooms.

With the development of modern medicine and social responsibility, millions of 20th Century humans are surviving previously fatal conditions and living on with significant disabilities. These individuals have a great potential to be happy, productive members of their communities. However, our best efforts to fulfill this potential have been consistently limited by a massive residue of prejudice and paternalism. Our society is still infected by an insidious, now almost subconscious assumption that people with disabilities are less than fully human, and therefore are not fully eligible for the opportunities, services and support systems which are available to other people as a matter of right.

More than two decades ago many of us in the disability community concluded that Americans with disabilities would never achieve full, productive citizenship until this nation made a firm statement of law protecting their civil rights.

The Americans with Disabilities Act is such a law. It establishes a clear and comprehensive prohibition of discrimination on the basis of disability. Taken in combination with previously existing disability rights law, it provides a sound legal framework for the practical implementation of the inalienable right of all people with disabilities to participate equally in the mainstream of society. It extends to people with disabilities the same protection of their rights that is already enjoyed by the members of all other minorities.

Most importantly, ADA is a landmark commandment of fundamental human morality. It is the world's first declaration of equality for people with disabilities by any nation. It will proclaim to America and to the world that people with disabilities are fully human; that paternalistic, discriminatory, segregationist attitudes are no longer acceptable; and that henceforth people with disabilities must be accorded the same personal respect and the same social and economic opportunities as other people.

ADA opens the doors of opportunity for millions of isolated, dependent Americans to become employees, taxpayers and welcome participants in the life of their communities. It prepares the way for the emancipation of more than half of a billion of the world's most oppressed people.

I am proud of America. I am proud of President Bush, Attorney General Thornburgh and Boyden Gray. I am proud of Senators Harkin, Hatch, Kennedy and Dole. I am proud of Congressmen Hoyer, Owens, Bartlett, Mineta, Fish, Brooks and all the great members of Congress who supported ADA. I am proud of former members Lowell Weicker and Tony Coelho. I am proud of Bob Silberstein, Bill Roper, John Wodatch, Melissa Schulman, Bob Tate, Maureen West and all the great Congressional and Administrative staff who authored and fought for ADA.

I am proud of Pat Wright, Lex Frieden, Evan Kemp, Sandra Parrino, Paul Marchand,
Wade Blank, Elizabeth Boggs, Liz Savage, Marca Bristo, Judy Heumann, Arlene Mayerson
and the thousands of other patriots who have struggled for long, hard years in a
wilderness of prejudice and paternalism for the victory of ADA.

Once again America has passed the torch of liberty and productivity to the world.

All who love justice must unite in action to protect our hard won ADA rights, and to ensure that they are implemented through strong regulations, and enforced in every community.

We of the disability community must communicate to America that full compliance with ADA can be profitable for all citizens, and we must join in cooperative action with government and the
private sector to ensure that all will profit.

But ADA is only the beginning. It is not a solution. Rather, it is an essential foundation on which solutions will be constructed.

We must undertake a courageous reallocation of our society's resources from paternalism to independence and productivity. We must invest in a continuum of new and strengthened programs to liberate people with disabilities from dependency, and empower them to be equal and productive participants in the mainstream: Productivity-oriented education for all citizens. Economic, technological, independent living, vocational rehabilitation, transitional, personal assistance and community based supports for productivity and quality of life. Prevention. Affordable insurance and health care for all. Incentives for productivity to replace disincentives. Accessible communications, transportation, housing, and completely new communities that are accessible as a whole.

A large agenda? Certainly! But no larger than that which faced our patriot forefathers at the successful conclusion of the revolutionary war.

Like them, we have accomplished much. Like them, we have a profound responsibility to make a bold declaration of equality real in the lives of hundreds of millions of people in future
generations.

I believe that we will unite to fulfill that responsibility. Because I believe in you, the patriots of ADA. And I believe in you, the patriots to be.

Together we have overcome. Together we shall overcome.

Thankful Thursday

It’s been a tough week and coming up with a list of things for which I am thankful is a little more difficult this week. When the bad times seem to engulf every aspect of your life, remembering to be thankful for even the small good things is, I believe, even more important. So, here’s today’s list – even if some of the items listed seem trivial. This week I will take what I can get! Today I am thankful for:

• People like Dave Hingsburger at Chewing the Fat who likes the idea of expressing thanks publicly and has challenged his blog readers to do the same. Thanks, Dave!


• Pizza Hut pizza, especially when the pepperoni is extra crispy


• The on and off rain showers we have had this week


• That my 14 year old son has lasted a week at his Youth Conservation Corps job, and I haven’t received a call to pick him up because of his behavior


• Red patent leather peep-toe shoes which lift my spirits when things are looking bleak. I’m wearing them today.


• That I was able to get to work and my parking space without too much trouble from the Michael Vick court date circus – the courthouse is right across the street from my office.


• That for the last week, Ashley has slept about 6 hours each night – not straight through, mind you, but it’s much better than the usual sleep patterns.


• That my rubekia flowers are in full bloom and add shots of brilliant yellow/orange color to my yard. And, that they are not poisonous to eat since Ashley has 3-4 each day.


• That I haven’t gotten any calls from my daughter, Jessica’s day support program to inform me of yet another incident of aggressive behavior.


• Amy

A Stepford Life

It seems like some people expect children with disabilities to be better behaved, have fewer outbursts, or be better disciplined than the average child. I’ve written on this subject previously in a blog entry on compliance. In that entry, I focused on the classroom and how children with disabilities were held, in my opinion, to higher standards than their non-disabled peers. But I’m seeing it more and more in other settings also.

On my daughter’s school bus – a bus which transports only children with disabilities – the children are expected to stay in their seats and face forward. Many of the children are harnessed in so they can’t move, but for the ones that aren’t, the bus driver and aide frequently yell at the children to sit down and face forward. Have you ever seen the school bus for children without disabilities? Kids are moving all around, leaning across the aisles, yelling to their friends, playing on their computers, and throwing paper balls. The bus driver on that bus just turns her radio up louder.

In the grocery store, I’ve seen shoppers glance in the direction of a toddler who is whining or throwing a fit over something he can’t have. But, let a toddler with Downs Syndrome do that, and the glances become a little more intense – a look that says, “Why didn’t you just leave THAT child at home?”

In the group home in which my oldest daughter lives, the staff often complains about how grumpy their charges are, how they don’t smile or laugh much. Well, if I was told when to eat, what to eat, when to shower and dress, and when to go to bed, I’m not sure I would be happy and bubbly all the time either.

Just because our children have disabilities, it does not mean they don’t have feelings and emotions. I have bad days when I just want to be left alone. My kids have bad days when they just want to be left alone. People with disabilities should not be held to any higher standard than people without disabilities. However, given what a lot of people with disabilities have to deal with on a day to day basis, I’m surprised they are not more rebellious than they are. I bet I would be.

I’m not a Stepford parent and I don’t want any of my children, with or without disabilities, to be Stepford children.