The Roving Activist’s Blog

The National ADAPT Youth Summit

June 29 – July 3, 2007

Chicago, IL

A call to action for young people with disabilities…

Any young person with a disability between the ages of 18 and 30 can apply!

ADAPT will cover the cost of shared housing, lunches and dinners during the Summit, training materials, and ASL interpretation.

Participants will be expected to pay for their travel to and from Chicago, as well as meals that are not provided. (Assistance with fundraising for these costs can be provided)

There are only a few spaces available – fill out the application and submit it with the brochure; deadline is April 13, 2007.

Exceptional Parent Magazine Position Statement on Ashley X
When the Slippery Slope Becomes a Mudslide

This EP Position Statement was prepared by:

Joseph M. Valenzano, Jr., CEO and President
Rick Rader, MD, Editor In Chief
Tricia Luker, Editorial Director-Organizati onal Relationships
Jan Carter Hollingsworth, Managing Editor

In its thirty-six year history, EP magazine has rarely taken a position in areas of controversy or differences of opinion. We prefer, as a matter of journalistic principle, to present objectively all sides to a given argument and debate, adhering to our mission of providing credible information for and on behalf of those involved in the care and development of children and adults with disabilities and special needs.

We have, however, taken a rather strong stance on issues such as:extending the benefits of the Orphan Drug Act, condemning a policythat endorses the use of restraints, and supporting the expansion of newborn screening utilizing tandem mass spectrometry (MS/MS).We thought long and hard about taking stands on these issues, and we did what we felt was the right thing. Now we find ourselves met with yet another great challenge the very essence of human life and dignity and our conscience dictates we do the right thing once again.

In January, the story of Ashley and her “treatment” burst out in the national news. Ashley, who is now nine years old and has significant and lifelong disabilities, was given “growth attenuation” surgery and medication when she was six years old to keep her from growing to a full adult size. Her parents, in a decision that they say in their website “was not difficult,” found physicians willing to surgically remove Ashley’s breast buds, her appendix (even though nothing was wrong with it), and her uterus. She was then treated with high doses of estrogen to stunt her growth. These procedures were performed without either court or ethics committee approval. Indeed, the institutional ethics committee that the family and physicians consulted prior to placing Ashley under the knife, decided to leave the decision in the parents’ hands, rather than engaging in the comprehensive, ethical debate the procedure deserved. As one might expect, the story of the “Ashley Treatment,” the name the parents themselves coined for the procedure, generated brief but bitter debate. Things have now quieted down again.

Barely three weeks after Ashley’s story hit the press, Switzerland’s Supreme Court, to virtually no groundswell of public outcry and very little public notice, ruled that it is now permissible in Switzerland to allow assisted suicide for persons with serious mental illness, even if their condition is not otherwise terminal. Switzerland already permitted assisted suicide for people with terminal illnesses at the time this decision was announced.

The “Ashley Treatment” and Swiss assisted suicide stories came along about 15 months after a Netherlands facility announced the creation and implementation of the “Groningen Protocol.” The Groningen Protocol, named for the pediatric hospital at which it was devised, described a five-step process physicians are encouraged to follow to sanction the euthanizing of infants who are born with serious, potentially life-threatening disabilities. The end step in the Groningen Protocol is that the physicians inject medication to kill the infants, rather than letting the infants pass away as a result of their disease or defect running its course. The Groningen Protocol physicians, at the time of announcing the Protocol, also announced that they had implemented the Protocol to euthanize four infants even before the Protocol was announced. One of those was a child with Down syndrome. Despite the implications of what the Groningen physicians call “a deliberate, life-ending procedure,” the story received no substantive coverage in America outside of the medical community.

The deafening silence now accompanying the not-so-subtle threats that people with disabilities face because of procedures like “Ashley’s Treatment,” mental illness based assisted suicide and infant euthanasia is appalling. Ashley’s story emerged three years after the major part of her surgery had been completed. Four infants were euthanized using the “Groningen Protocol” before the public even knew the protocol existed. How and why does this happen? And why does the Ashley story suddenly surface?

History has shown us that children with disabilities have been victims of involuntary sterilization, institutionalization, and widespread abuse, neglect, and death. Historically, society had little or no expectations for children with disabilities, and their families frequently felt shame. In the last 50 years, parents and professionals have united to reject these inhuman practices and to insist that our children have the same opportunity for lives of dignity and achievement that we expect for ourselves. EP magazine has been a leader in fighting to preserve the human dignity of life itself a life we all share, regardless of the existence or degree of disability we might encounter individually.

These dramatic news stories do not represent isolated instances of hard choices in hard times. Each story represents a conscious attempt to expand the number of life-ending or life-altering procedures available to physicians and parents who would choose to use them and, in so doing, rob the child of her or his human dignity. The creators of these procedures want them to be adopted and used by physicians and families throughout the world. The utilitarianism they promote in the name of compassion is nothing other than new language and new ideas designed to encourage the systematic denigration of those with disabilities, stripping them of the basic human right to life and dignity. Over sixty years ago, millions died to rid the world of people who perpetrated these same shameful acts in the name of bogus science. Have we now ignored that sacrifice and the lessons they taught us?

It is an outrage that no court or ethics committee engaged in the soul-searching debate a procedure like “Ashley’s Treatment” should have generated. It is an outrage that society should countenance extreme surgical procedures and hormone injections as a solution to the challenges of caring for a six year old with complex disabilities. It is a shame and an affront to the human dignity of every one of us to permit these procedures on even one child. We need to make it right and make sure it never happens again.

We are heartened that so many organizations within the disability rights movement in America have acted swiftly to condemn “Ashley’s Treatment.” Their actions are justified on several fronts. But we all must become more zealous in our efforts to expose and condemn all similar affronts to human dignity posed by practices like the Groningen Protocol and the use of assisted suicide to address serious mental illness.

We see “Ashley’s Treatment,” the “Groningen Protocol,” and the Swiss assisted suicide decision as thinly veiled attempts to objectify and desensitize the value of human dignity. It should never be acceptable in America for a care-providing parent or guardian to authorize and procure “Ashley’s Treatment” for a child and have the decision be “not difficult.” The difficult action, and the action we at EP choose to take, is to fight for the human dignity we all have the right to possess. Taking that away should not just be difficult; it should be impossible. And it should make us all angry that these efforts to strip human dignity are happening all around us in relative secrecy. We cannot let these
stories fade away or our dignity fades away with them. We need to be ever mindful of the words “all that is needed for evil to prosper is for good men to stand by and do nothing.”
Please, for our children’s sake, their children and generations to come, let us not stand idly by. Let us do something. We urge the following:

* EP calls upon all professional medical, dental, and other health
care related organizations, associations, and societies to come
forward with a statement denouncing these treatments and
sanctioning those who take part in it.

* EP asks private foundations as well as federal and state
agencies and departments to consider cutting off all grants to
those hospitals or institutions that allow such procedures to
take place.

* EP calls upon all of science and medicine to denounce publicly
the Groningen Protocol, Ashley Treatment, and the Swiss decision
on assisted suicide.

* EP encourages all disability organizations that have not yet
issued statements to join with us in this effort.

And what will we, EP magazine, do as a publishing and
communications company? We will do what we do best, publish and
communicate. And what form will this take, specifically?

* EP will continue to offer articles in its print publication and
on it website that inform and educate parents and professionals
about resources and best practices. The operative words are
inform and educate. We are not in the business of inciting.

* EP will explore hosting an EPLiveOnLine seminar series
http://www.epliveonline.org which will explore topics
such as:

- the history of human rights and medical abuses perpetrated
against those with disabilities

- the protocol and principles employed by modern day ethics
boards and committees

- a review of the United Nations Universal Declaration of Human
Rights

* EP will re-dedicate itself to constantly scanning the disability
landscape, nationally and internationally, for murmurs of abuses
such as the Ashley Treatment, the Groningen Protocol, and the
Swiss assisted suicide issue. When found, EP will bring these
issues to the fore, endeavoring to keep them from slipping
beneath the public radar screen.

* EP will encourage, through verbal and written communiquis, the
primary care physicians, pediatric and adult neurologists,
psychiatrists, occupational and physical therapists,
developmental disability nurses, physical medicine and
rehabilitation specialists and other allied health care
professionals with whom we have relationships and contacts to
take every opportunity available when they teach and present to
mention the “slippery slope” phenomena discussed in this
article.

* EP will develop and provide, upon request, a brief PowerPoint
presentation that presents modern day issues that are too
reminiscent of past abuses and horrors.

* EP pledges to provide comprehensive, written materials and
specific informational pieces on how to access relevant
community supports and services and how to navigate federal and
state special education law. These will also be made available
on the EP website.

* In its continuing effort to be open and responsive to its
readers’ most pressing and prevalent questions and needs, EP
will set up a special channel on its website where readers can
pose questions on how to access community supports and services.

* EP will give voice to advocates by providing an abbreviated
version of this Position Statement on its website and allowing
website visitors the opportunity to express their support by
signing their names to this statement online.

Source: Exceptional Parent Magazine
http://www.eparent.com/newsletter/StatementToOrganizations.htm

At 4:51 CST yesterday, February 12, nine minutes before the FRIDA deadline, a representative of the AMA named Michael Lynch called our contact, Sharon Lamp, and left a voicemail to the effect that the AMA wants to explore setting up a meeting with our coalition.  They also wanted to know who would be at the meeting.  It is unclear at this time what Lynch’s AMA job is.

Sharon left a voicemail back and is working this morning to reach Lynch and nail down a date and time. Until we get a meeting date and time, hold your breaths, folks!!!

We think that, in addition to the letters and calls from the community, that the action conducted yesterday by Capitol Area ADAPT prompted the phone call. Please read on for Bobby Coward’s description:

“Capitol Area ADAPT sought to support Not Yet Dead, National ADAPT and Feminist Response in Disability Activism to demand the American Medical Association issue a resolution or statement condemning the ethics of the Ashley X case; the AMA Council on Ethical and Judicial Affairs (CEJA)  meet with FRIDA/ADAPT/NDY coalition to review the Ashley X case and open public dialogue on disability ethics and issue a statement of support for the Community Choice Act (formerly MiCASSA) because community supports should have been an option for Ashley.

“Capitol Area ADAPT entered the JW Marriott  in DC with less than a handful of members, although we was quite effective in our goal. With the small number of ADAPT members, we were not only able to enter hotel and bypass door security, we were able to take elevators down to conference area. When we arrived at the conference ballroom doors, the doors were blocked by hotel security. We tried to enter the first ballroom where the spouses of the AMA members were meeting, but we were stopped from entering. We began using subversion on the spouses, stating ADAPT believes that doctors should REPORT CHILD ABUSE, NOT COMMIT CHILD ABUSE! We also asked the spouses how can you support someone who practices eugenics. The spouses became quite disturbed with ADAPT and steered clear. Capitol Area ADAPT sought the conference site of the AMA members. We found the ballroom were the AMA members were and entry doors was blocked as well by security. Unknown to ADAPT the AMA had alerted the hotel security and police about demonstration activity and as soon as we approached entry doors where hotel security was posted. One police officer and a host of hotel security emerged on us and stated we were wondering when you all would show up. We asked could we speak to an AMA spokesman and we were denied. They told us that we had to leave because we were disturbing the conference. ADAPT received an escort out of the hotel and as we were escorted out, security informed us that the AMA knew we existed. SO FEW DID ACCOMPLISH SO MUCH!”

What a terrific action by Capitol Area ADAPT!!!!  Many thanks to everyone in the community who worked to get the FRIDA demands on the AMA’s radar!  Stay tuned for a follow up on getting a meeting date and time with our targets!!!!

FRIDA

A Statement of Solidarity for the Dignity of People With Disabilities - A Reaction to the “Ashley Treatment”

We, the undersigned individuals and organizations, are in agreement that the growth attenuation therapy administered to the little girl known as Ashley is an affront to her human dignity, and to that of all people with disabilities. Despite the good intentions of both her parents and the doctors who have treated her in accordance with their wishes, we condemn these medical procedures and declare that it is never ethically acceptable to medically alter a human being for the benefit of caregivers. Such unnecessary medical procedures without therapeutic indications demean the essential humanity of the person undergoing them and of all people with similar disabilities. Whether disabled or not, people must be given the opportunity to grow and develop according to their own capacity, whatever that may be. It is the duty of both caregivers and the hallmark of a progressive, civilized society to provide the means by which all of us can reach our full human potential.

Ashley is impaired by an unknown brain disorder. Our hearts go out to her parents, and we recognize that they love Ashley and are trying their best in very trying circumstances to care for their daughter. But these unnecessary medical procedures with no demonstrated therapeutic purpose, in which doctors have surgically and hormonally altered Ashley to remain small and childlike, are misguided. While it is true that none of us can walk in her parents’ shoes, we believe that this approach to easing the hardship of caring for a child with disabilities makes the child the problem, and by doing so, makes it acceptable for well-meaning people to deny the essential humanity of people with disabilities in the course of caring for them. People with disabilities are not the problem. The real issue is the lack of support, care, and help from our social, medical, and civil establishments for Ashley’s parents and for all those who care for people with disabilities. Yes, it is expensive. But the alternative is morally and ethically unacceptable in a society that honors life and human dignity. We call on our fellow citizens, our government, and our medical establishment to treat people with disabilities as people, not as problems. We stand together and demand that doctors and social service agencies never again use medicine to strip someone of their humanity through medical procedures like the “Ashley Treatment,” and call on our legislators to pass laws that codify the right of people with disabilities to their integrity as people.

To add your name to this document electronically, please go to
http://pub6.bravenet.com/guestbook/501900445 .

To read more about Ashley, go to http://www.ashleyx.info

To read about the Martin Treatment, one family’s positive answer to the Ashley Treatment
http://martintreatment.spaces.live.com/

Susan Fitzmaurice
ADA Coordinator,City of Dearborn
ADA Coordinator, Disability Network/ Wayne County

Speak out against the “Ashley Treatment”
ACTION ALERT

Fax/E-mail/Phone Campaign

Feminist Response in Disability Activism (FRIDA), with the support of
Chicago ADAPT, the national ADAPT community and Not Dead Yet,
urges you to speak out about the “Ashley Treatment.”

Our Targets: Seattle Children’s Hospital staff involved in the case of
nine-year-old Ashley’s growth attenuation and sterilization, as well as
Melinda Gates, chair of the Seattle Children’s Hospital fundraising
committee and Susan Macek, Director of Communications for Seattle
Children’s Hospital.

Why: To oppose their permission of what is now known as the “Ashley
Treatment,” and to condemn further permission of such “treatments” for
children with disabilities.

When: Thursday, January 11 & 12, 2007, starting at 9 am in your time zone.

Here’s The Story:

Ashley is a nine-year-old with a severe cognitive disability. In order to
keep her small and more easily cared for by her family, doctors at
Seattle Children’s Hospital are having her undergo hormone “therapy”
to stunt her growth. In addition, they surgically removed her breast
buds, uterus and appendix. The “Ashley Treatment,” as her parents
call it, is a medical “fix” to serious social problems we face in America
today. The first of these problems is a lack of quality home-based
services for people with disabilities. The second is the social attitude
that people with disabilities are less than human and therefore fair
game for experimentation. The third is a lack of understanding of
disability vs. illness: as Joe Hall of South Carolina has stated, “When
I was born my parents knew that I would never walk, but they would
have never thought it would be acceptable to cut my legs off.”

Tell these individuals that you oppose the Ashley Treatment, and that
children with disabilities regardless of cognitive level or ability, should
not be subjected to experiments and mutilation for the convenience of
others.

For your convenience, you may use the sample letter below, or edit it to
make it more personal.

Sample Letter:

Dear__________,

I am opposed to the Ashley Treatment. Despite the rationalization that this
treatment will improve the quality of life, it is nothing more than
experimentation and mutilation for the convenience of others. Children with
disabilities regardless of their cognitive abilities should not be subjected
to this barbaric practice. The Ashley Treatment is immoral, inhumane, and
unethical, and the danger is that the medical community can extend this
practice to all children with disabilities, with or without the consent of
parents. I urge you to end your support of this abhorrent “treatment” and
instead, give your support to more personal care services and supports for
parents of children with disabilities. It is the broken system that fails to
provide adequate community supports for people with disabilities that must
be fixed, not children with disabilities.

Sincerely,

Your Name

Contact Info:

Dr. Douglas Diekema
E-mail: Douglas.diekema@seattlechildrens.org
Phone: 206-987-2380
Dr. Daniel F. Gunther
E-mail: Dan.gunther@seattlechildrens.org
Phone: (206) 987-2380
Melinda Gates
Email: info@gatesfoundation.org
Susan Macek
Director of Communications, Seattle Children’s Hospital
E-mail: susan.macek@seattlechildrens.org
To review Ashley’s parents’ blog, please see:

http://ashleytreatment.spaces.live.com/

To review one of the original articles as reported by the BBC, please see:

http://news.bbc.co.uk/go/pr/fr/-/2/hi/americas/6229799.stm
We need to let the Seattle Children’s Hospital and its fundraising
chairperson know that the Ashley Treatment has not gone unnoticed
by those of us who live with disabilities.
Dr. Douglas Diekema
B-5520 - Emergency Medicine
4800 Sand Point Way NE
Seattle, WA 98105
Fax: (206) 987-3836

Dr. Daniel F. Gunther
M1-3 - Endocrinology
4800 Sand Point Way NE
Seattle, WA 98105
Fax: (206) 987-3836

Melinda Gates
PO Box 23350
Seattle, WA 98102
Phone: (206) 709-3100
Fax: (206) 709-3252
Email: info@gatesfoundation.org

Susan Macek
Director of Communications, Seattle Children’s Hospital
Phone: (206) 987-5201
Pager: (206) 469-6310
E-mail: susan.macek@seattlechildrens.org

ADAPT reacts to news of “Ashley Treatment”

For Immediate Release:
January 5, 2007

For Information Contact:
  Amber Smock (312) 253-7000 x191; Ambity@aol.com
  Marsha Katz (406) 544-9504; ADAPTMT@aol. com
  http://www.adapt. org

                 ADAPT Youth Appalled at Parents
         Surgically Keeping Disabled Daughter Childlike

Youth members of the national disability rights organization,
ADAPT, today expressed shock and outrage on behalf of the entire
national membership of ADAPT at the news of nine-year-old Ashley
from Seattle, whose parents had her uterus, appendix and breast
buds removed, in addition to having her undergo hormone injections
in order to minimize her height and weight as she grows older. In
their blog, Ashley’s parents have rationalized these drastic
measures to manipulate Ashley’s size and physical maturity by
saying it will be easier for them to care for her and involve her
in family activities.

“As a young woman with a disability, I am extremely disturbed on
multiple levels by Ashley’s situation,” said Amber Smock of
Chicago, Illinois. ” I am angry that Ashley’s parents, the medical
establishment and society at large think it is acceptable to
surgically and hormonally manipulate Ashley because the reality of
her adulthood as a person with a disability is too ‘grotesque’ for
them. With these drastic measures, her parents and doctors are
physically reinforcing the disrespectful attitude held by many
that people with disabilities are all “childlike,” and can be
treated like property or science experiments. ”

Ashley has now become a modern day symbol of the long and
dishonorable tradition of sterilizing people with disabilities. In
1927 the U.S. Supreme Court decision in Buck vs. Bell upheld that
tradition as a way to “eliminate defectives from the gene pool.”

Today, parents and others rationalize sterilization by saying it
will prevent any possibility of pregnancy from abuse. Ashley has
not been reported to be at risk of either abuse or pregnancy, and
her parents say that her only caretakers are themselves and her
grandmother. Ashley’s parents also say in their blog that removal
of her uterus will prevent her from having periods. For over two
decades there have been far less invasive means of suppressing
menstruation in women when medically indicated. It is not known
why Ashley’s parents resorted to the much more invasive procedure
of a hysterectomy.

“Perhaps even more distressing to those of us with disabilities, ”
said Smock,” is that a medical ethics committee supports treating
Ashley not as a human being, but as a ‘problem’ to be managed in a
way they wouldn’t consider or allow for other children. We have
enough difficulty with the medical establishment’ s power over our
lives, and its lack of recognition of disability as a social
status and not a medical problem that must either be “cured” or
“killed.” This case opens the door for other people with
disabilities to be subject to mutilation and chemical castration,
simply because we have a disability.”

“The severity of Ashley’s disability does not mean that it’s okay
to treat her as less than a full human being,” continued Smock.
“The impact of Ashley’s situation is not limited to just her and
her family. Ashley’s mutilation has started us down a slippery
slope where her case could very well be used as a precedent to
damage one person with a disability after another. Instead of
mutilating children, we need to put our energy into assuring that
people with disabilities and their families have the support they
need to age naturally and live lives of quality in their own homes
and communities. ”

On behalf of ADAPT, Youth ADAPT members encourage the Seattle
Children’s Hospital ethics committee that approved the invasive
procedures to issue a statement acknowledging the socially and
other harmful aspects of what Ashley’s parents are now touting as
the “Ashley treatment.”

Source: ADAPT

I remember when this story first broke back in early January. I was listening to the BBC some time after midnight, which is the only time that you can catch it on the radio here, and only on NPR, at that. I was experiencing my usual bout of insomnia when this incredible story came on about a couple in Seattle who had a daughter with severe disabilities, who, though she was nine years old, had the mental age of a three month old due to an unknown form of brain damage. The parents, under the guise of making it easier to care for Ashley, their daughter, had her uterus and breast buds removed, as well as her appendix, and if that wasn’t enough, had her pumped full of estrogen in order to stunt her growth! And guess what? This was done to her when she was six years old! The estrogen treatments are ongoing.

Her parents refer to this sickening series of alterations and experimentation as the Ashley Treatment, and recommend other parents of children with severe brain damage to do the same thing to their kids.

As I listened to this, I couldn’t help thinking: no, this can’t be true. This is a joke, right? How can parents who love their child do this? Ashley’s parents say that they did it to make life more comfortable for Ashley, and to make it easier to care for her. They did not want her to be a target for sexual predetors, so they had her breast buds removed. They also said that large breasts ran in their family, as did breast cancer, so they did not want Ashley to have to deal with the discomfort of large breasts, or the risk of breast cancer. Ashley was given a hysterectomy so that she would not have to undergo menstruation. Her appendix was removed just in case it ruptured, and she was and is given estrogen to stunt her growth in order to make her more portable. They said that the decision to do what they did was not hard at all.

The parents call Ashley their Pillow Angel because if placed on a pillow, she remains there. Ashley cannot move or speak, but she is a gorgeous little girl with a beautiful smile, and the prettiest eyes. I cannot believe that parents would do this. As far as I am concerned, the reasons that they gave are a crock. They, along with the grandparents are the only ones who care for Ashley, so what sexual predetors are they protecting her from? Sure, breast cancer may run in her family, but that doesn’t mean that she will have it in the future. As for the discomfort of menstruation, well, what do you think Tylenol, and a heating pad are for? And, too much estrogen is bound to cause major problems. If Ashley got too big for her parents to lift, well, that’s what attendant services and Hoyer lifts are for

Face it — the only reason that Ashley’s parents did this to her was to make life easier for them. The horrors visited on Ashley would not have happened if she were not a child with disabilities, and a girl. If what had been done to Ashley was done to a non-disabled child, the parents would be in jail as we speak. Indeed, they would have been stopped before the first surgery!

I wonder what this slippery slope is leading to? If this can be sanctioned for children with severe disabilities, where does one draw the line? It was not very long ago that people with disabilities were euthanized, or placed in institutions against the will of their families. The Ashley Treatment speaks to the fact that the life of a person with a disability is still not as worthy or as sacred as the life of a non-disabled person, and though we are living in the 21st century, we, as activists, advocates, and parents who love our children, must maintain a strict vigilance and speak out against this injustice, lest we find ourselves repeating history.

On January 1, the Democrat and Chronicle ran a special called “Readers Give Spitzer Advice”. A few days before, the paper asked New Yorkers what they thought should be then Governor-elect Eliot Spitzer’s priorities. I sent in the following letter, and to my utter amazement, nearly all of it was printed!

Governor’s Top Priorities Should Include Housing 

Governor-elect Spitzer will have many tasks to attend to once he enters office on January 1. I would encourage him to address the needs of a group of New Yorkers who are often overlooked - people with disabilities. While our community faces many challenges, the starkest of these is the lack of affordable, accessible, integrated housing. People with disabilities are literally facing a housing crisis!

The lack of affordable, accessible, integrated housing forces people with disabilities into segregated, often institutional settings. Those who are already in an institution find it almost impossible to get out when the deposit and rent for an apartment are more than their Social Security checks. Home ownership, for those who can afford it, is practically out of the question because the vast majority of homes are inaccessible to people with mobility impairments.

Despite this, there are solutions that the new Governor can enact. A Housing Trust Fund can be developed, which would create a revenue stream for developing housing, providing rental subsidies, and paying for home modifications. Medicaid waiver programs with a home modification component can be created, and federal funds leveraged for accessibility modifications for those who need them. He can see to it that the various housing authorities work together, and support efforts to apply for Section 8 vouchers as a “local preference” target for those who want to transition from an institutional setting to the community. Finally, the Governor can support visitability legislation that requires that all new single-family homes funded with state or federal funds be built with at least one no-step entrance, at least 32-inch wide doorways, and an accessible bathroom on the first floor. These few solutions alone could go a long way towards addressing the housing crisis.

As a person with a disability, I am lucky. I live in a loft in downtown Rochester, a five-minute bus ride from work. It already had an elevator, and wide doorways. Other than lowering a couple of shelves, no other modifications were made. My neighbors are ordinary folks - college students, thirty-something couples, and other average Janes and Joes. In fact, I am the only person with a disability who lives there, and I like it. Like most folks with disabilities, I don’t want to live in a building full of “wheelchair people”. In my present situation, my neighbors are getting to know me, and realizing that I am an ordinary person, much like them, with many of the same likes, dislikes, and interests. If more people with disabilities could live in their communities with affordable, accessible, integrated housing, people would begin to see us as real human beings and valued members of our communities. We would have more opportunities to work, shop, go to school, volunteer, start businesses, and a host of other positive things. Our being in the community would not only save the state money that would otherwise be spent on institutional care, but we would also generate tax revenues by working, traveling, and spending money. When viewed in those terms, it is easy to see why addressing the lack of affordable, accessible, integrated housing should be one of the Governor’s top priorities.

Anita Cameron
Systems Advocate
Regional Center for Independent Living

The next day, I received a call from Greg Livadas, a reporter with the D&C. He’d seen my little article, and asked if I would listen to the Governor’s State of the State address and give my reaction. The next day, Chris, Arlene, and I watched and listened over the Internet. Dean was not able to participate, as there was no closed captioning. Dean did address that eventually.

Anyway, I was disappointrd that there was no mention at all about people with disabilities, and I sent in a short article. Two sentences of it was printed the next day. Here it is in full:

One New York?

Governor Spitzer, in his State of the State address, emphasized the concept of “One New York”, and several times, made mention of communities that were often left behind. Unfortunately, one community of well over six million were not afforded even the smallest mention in his plans - the community of people with disabilities. Disappointing as this was, it is also frightening because forgotten communities are usually the first to have critical services cut when the state needs to balance its budget. It is my hope that Governor Spitzer will recognize and work with people with disabilities so that we, too, can enter the new era of opportunity and prosperity.

I heard about the Main Street Armory back in late December. The Armory is an old armory that was bought and renovated, and reopened as a sports venue, though other events, such as the Renaissance Festival, and the Shriner’s Circus takes place there.

Unfortunately, the place is barely accessible to folks who use wheelchairs. One has to navigate a gravel ramp out back to get in, and anyone who uses a wheelchair knows that gravel is not their friend.

After a glowing report in the Democrat and Chronicle, our local newspaper, I placed a call to the Armory, and got none other than the owner, Scott Donaldson, on the phone. He told me that the Armory was accessible, but not like he wanted. He said that they had brought an elevator, but had not yet installed it. Somewhere in that converstion, he revealed to me that he is blind. Interesting.

I gave it a couple of weeks, then, wrote a letter to Mr. Donaldson to ask a few more questions, and to offer our services. I’m sure that he has an assistant who reads him his mail. Here is the letter:

January 25, 2007

Scott Donaldson
900 East Main Street
Rochester, NY 14605

Dear Mr. Donaldson:

My name is Anita Cameron, and I am a Systems Advocate with the Regional Center for Independent Living (RCIL), which is located here in Rochester. I spoke with you on December 29, 2006 after reading the article in the Democrat and Chronicle about the plans for the Main Street Armory. It was good talking with you that day, but I thought that I would write this letter as I have more questions about access for people with disabilities at the Armory.

In our conversation, you stated that the Armory was accessible, but not as much as you would like it to be. You mentioned that an elevator had been purchased, but had not been installed. What is the status of the elevator? Has it been installed yet?

I am aware that the Armory will host arena football games and other sporting events, as well as the circus. What are the seating arrangements?  Is there any accessible seating for people who use wheelchairs, and will they be able to sit together if they want?

I sensed from our conversation that access for people with disabilities is important to you, as well. RCIL will be happy to conduct a walk through of the facility with you and offer input and suggestions for making the Main Street Armory accessible to all. Please feel free to contact me at (585) 442-6470 ext 164 to arrange this. I look forward to working with you.

Sincerely,

Anita Cameron
Regional Center for Independent Living

To date, I have not heard back from Mr. Donaldson, though I have left him several meesages. As it happens, we will be meeting with a gentleman who has had problems with access at the Armory, and I will brainstorm with everyone on what our next move should be. Stay tuned.

In December I was forwarded an e-mail from a woman who had gone to a bridal shop with her newly engaged daughter to shop for a wedding gown. What should have been a happy event turned into one of those tales that makes one gasp with indignation. I sent a letter to the manager of the shop. I’ll let the letter speak to what happened to the mother of the bride-to-be.

December 18, 2006

Peggy’s Bridal and Tuxedo
3025 Monroe Avenue, Suite 200
Rochester, NY 14618

Dear Manager,

A very disturbing incident involving a customer has come to my attention and I am referring the matter to you in the hope that this will soon be resolved to the satisfaction of all involved.

On November 18, 2006, a woman and her daughter approached your shop located at 3025 Monroe Avenue, Suite 200, in Rochester, NY. The woman’s daughter had recently become engaged, and was looking to purchase a wedding gown. As they entered the shop, a female employee quickly approached the two, and referring to the mother’s wheelchair, stated, ” I don’t want you to take this the wrong way, but I don’t want the wheelchair on the carpet because it will get it dirty.” Both were shocked at the statement, and noted that other customers were coming in from outside with their shoes on, potentially dirtying the carpet as well, but nothing was said to them. Needless to say, both mother and daughter were quite upset; indeed, the daughter left in tears.

The action taken by your employee toward these potential customers was not only profoundly insensitive, but illegal as well. In denying access to the shop to a person using a wheelchair, your employee violated Title III of the Americans with Disabilities Act (ADA). Title III of the ADA governs public accommodations and services operated by private entities. This includes shops, hotels, theaters, gas stations, restaurants, and other businesses.

I would like to meet with you to discuss the incident, and to work with you and your employees on improving your sensitivity to people with disabilities so that this will not happen again. Thanks to the ADA, people with disabilities are able to participate in all facets of life, so there is a strong possibility that you or your employees will encounter many potential customers with disabilities. I would hope that the prospect of new customers would outweigh the minor issue of dirty carpeting.

Please contact me at 585-442-6470 ext. 164 by January 8th to set up a meeting. We can meet at my office, located at 497 State Street in Rochester, or I will be happy to come to your shop. I look forward to working with you.

Respectfully,

Anita Cameron
Systems Advocate
Regional Center for Independent Living

On December 20, I received a call from Darlene, the manager of Peggy’s Bridal. She was extremely concerned, even a bit scared, and wanted to tell her side of things. She stated that they would never discriminate against anyone, and felt that there had been a misunderstanding. Darlene admitted to being very upset over the incident, feeling that perhaps, it had not been handled properly. She immediately agreed to a meeting on January 12. I contacted Mrs. S, the mother, to see if she or her daughter could make it, but neither could.

On the appointed day, Chris, Arlene, and I met with Darlene at Peggy’s Bridal. We were given a tour of the place. It was posh and swanky, to say the least, with wedding gowns and dresses that cost as much as a luxury car, and tiaras that probably cost half of my yearly salary. Really, I’m not kidding!

Surprisingly, the place was very accessible. The fitting rooms were wheelchair accessible, as was the restroom. Chris and I tried them out. There was enough space down the aisles that someone using a wheelchair would not brush up against the gowns. Really, the place was ideal!

After the tour, we gathered in the front with Darlene and her staff, including some who had come on their day off to attend the meeting. Darlene explained that they had not been in the location very long. Their previous location was cramped and inaccessible, and they wanted to make sure that this location would be accessible to all, so they took a hand in the design of the facility themselves, just to be sure. 

According to them, Mrs. S. and her daughter came in on a Saturday, a day that is normally very busy with folks who have made appointments. Walk-ins are welcome though, and as Darlene tells it, mother and daughter were already inside. They wanted to clear a space for them, and somewhere in the hubbub, a remark was made about Mrs. S.’s wheelchair. That’s when things went South.

I gave a quick crash course on disability etiquette, and we had a discussion about the importance of the carpeting, and how things could have been handled better. They were very gracious about it, and asked us how, in the future, they could go about this without seeming discriminatory. The problem, they explained, was that many of the gowns had already been purchased, and were being altered to fit the bride. Some of these gowns had very long trains that would extend onto the carpet, and if the carpet were dirty, the gowns, themselves would get dirty, and as I stated earlier, these gowns are pretty expensive, and would probably cost a mint to be cleaned. Darlene wanted to require everyone to remove their shoes and wear booties. She wanted to know how they would handle this with someone who used a wheelchair, crutches, or a walker.

We suggested that they put up a sign instructing everyone to remove their shoes and change into booties (provided by Peggy’s Bridal) in wet, inclement weather, and to place a mat at the door where someone using a wheelchair or other mobility devuce could dry off. Towels could be offered, and assistance could be given, if needed, to dry off wheels, etc., and folks with blindness, visual, or reading impairments could be informed of the signage so that they would not feel singled out. Staff must be present at the front door at all times to avoid the mishap of the previous month. We also suggested that they contact Mrs. S., and let her know what happened, and offer her some sort of small restitution for what she went through. Everyone thought that the ideas were very good ones, and Darlene said that they would attend to them soon.

We talked at length about interactions with people with disabilities, and it seemed that they were indeed, sensitive. We told them that in the future, all staff must be cognizant of their behavior and attitude, and that they must think carefully before they speak to anyone, no matter how harried they are, or how bad the day is going. Failure to do so would result in precisely what they were dealing with — the loss of a potential customer who was not only very angry, but who knew enough to get a disability rights group involved.

Overall, the visit and meeting went well. I was dissapointed that Mrs. S could not be there because we will actually never really know exactly what happened. From Mrs. S.’s point of view, they were uncaring and insensitive. Needless to say, the folks at Peggy’s Bridal thought that it was a simple misunderstanding. I feel that the truth is somewhere in between. I’m just glad that this has been cleared up, though probably not to Mrs. S.’s liking. She wanted us to throw the book at them, and was probably disappointed with the resolution. I have not heard from her since I informed her of what happened. I would hope that in the future, if possible, the person who we are advocating for could be present during the resolution of their problem. It would be so much better for all concerned. 

I do intend to go back and see if they have done what they promised. The weather has been abominable, but when it clears up, I’ll pay them a surprise visit.