The Illusion of Inclusion By Robert Gumson (Reprinted from Zeh Lezeh By Jay Ruderman, The Ruderman Family Foundation at http://rudermanfoundation.org)

robert-gumson

In my 40th year working in the field of advocacy and services by and for people with disabilities, I am compelled to speak my mind about inclusion. Inclusion shouldn’t be a buzzword; it needs to be a synonym for humanity and community. It isn’t a gift or reward; it is borne out of a hard won struggle—achieved in the same way the Jews of Egypt won freedom over slavery and passed the memory of that struggle down from generation to generation so others may learn. People with disabilities represent the largest and poorest minority group in America today, with 68% out of the workforce and three times the poverty rate of others. And we remain feared by the business world and enslaved by antiquated sub-minimum wage laws that hold us prisoners to charity rather than empower us with inclusion.

In the daytime I’m the administrator for the largest independent living program of advocacy and services controlled and guided by people with disabilities in the nation. At all times of the day, I am a husband, a father and the Board President of Jewish Family Services of Northeastern New York (JFS) in Albany. Since losing my vision as a child while growing up in Brooklyn in the 60’s, I have dedicated my life to living the American Dream, alongside and as part of the fabric of my community. However, as people with disabilities, no matter how typical the world around them and participatory in the world among them, we question if we are truly accepted as just another community member rather than someone special. Too many people I’ve known throughout my life believe I possess some unique strength, skill set, determination or spirituality just because I find ways of doing everything they take for granted. I know inside my own mind that I’d be just as determined and bold if I were blind or not. Sure, I probably gained some grit from rising up in adversity, but I probably learned more strategies because my parents let me grow up on the streets of Brooklyn.

My greatest realization that I have indeed achieved what I have strived for all my life, of being nothing more than an ordinary contributing community member, came to me over a year ago when JFS chose me as their Board President. Nobody second guessed if I could fill the role. Nobody worried about accommodating me or questioned if I could step up. If I had a need, it was left up to me to make it known. I couldn’t ask for a more fully inclusive and enlightened community to work amongst than the folks I have come to know and count on in the Capital Region of New York. Oddly enough, they do not know how I feel about all this because it is a very personal sense of fulfillment that I’m not sure translates well for anyone who hasn’t lived with a disability. Nevertheless, I want to shout it from a mountain because it is a rare moment to be accepted and included and it calls for celebration. I pray for a time in our chapter of human history when all people with disabilities are naturally integrated into society, because we have passed on the memories of how enriched our lives have become as a result.

Aside being ineligible to get a driver’s license, Bob Gumson lives a full and fascinating life since losing vision from an eye disease as a child. He has hitchhiked across America, earned a graduate degree, raised a family, been involved in disability rights, attended nearly a thousand live concerts and serves the community in a variety of volunteer positions. He writes poetry, personal essay, memoir and “fracoir” (fractured memoir).

“InSight,” By Julie Cardone, NYS Commission for the Blind, Guest Blogger for February 2014

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Think for a moment about all the steps it takes for you to get ready in the morning. You turn off your alarm, roll out of bed, make a cup of coffee, fix it to your liking. You step in the shower, comb your hair, brush your teeth, and maybe put makeup on. Then you hurry to your bedroom, pick out what to wear for the day, get dressed, and head out the door. Maybe you take the garbage out, walk the dog, or cook breakfast in between. Then, you take on the real challenges of the day when you arrive at work.

Now think for a moment about doing all of that without being able to see.

People all over the world must live with such circumstances. But for 100 years, New Yorkers have been able to turn to the New York State Commission for the Blind (NYSCB), a division of the Office of Children and Family Services (OCFS). NYSCB offers vocational rehabilitation services to help people who are blind live as independently as possible, giving all individuals the opportunity to succeed. The Commission offers the tools, counseling, and guidance to assist New Yorkers, many with multiple disabilities, in making decisions that will help them achieve their personal and vocational goals.

Sometimes, the help provided comes in the form of job training, or a liaison to bridge the gap between individuals and their employers; sometimes, it means helping New Yorkers find a new way to do things. NYSCB is focused on equality, giving everyone the chance to be integrated in their communities and to live fulfilling, productive lives.

That opportunity is embodied in a historic name change in 2013, the same year as NYSCB celebrated its centennial with events in major cities across the state. Under legislation signed in July by Governor Andrew M. Cuomo, the transition was complete to the “Commission for the Blind.” By removing the term “visually handicapped” from our name, NYSCB signified a step forward in affording blind individuals the same respect as their peers. The word “handicapped” suggests a helplessness that goes beyond a physical or mental limitation created by a health condition. No such word defines any New Yorker who is blind.

An individual can receive assistance from NYSCB early in life. The Commission provides rehabilitation services to children who are blind, and works with parents to arrange services to supplement educational activities, building skills and promoting the future independence of each child. Additionally, NYSCB sponsors a summer camp and recreational opportunities to foster social skills and self-esteem among legally blind youth. Following adolescence, the Commission provides services to assist in the transition of youth from school to occupational opportunities, which encompass how each student will be living, learning, and working in his community.

It is in adulthood when the NYSCB’s Vocational Rehabilitation (VR) Program begins to help legally blind New Yorkers to find or retain employment. Vocational counselors work with the individual to develop an Individualized Plan for Employment (IPE), which acts as a road map to guide the consumer toward their employment goals. There are also Assistive Technology Centers (ATC) that offer assessment of the client’s computer skills and training, and evaluate which hardware or software are most appropriate for the client to use depending on the degree of vision loss and the client’s vocational goals. These centers are available for any individual who is blind beginning or returning to employment. Trainers at seven sites teach clients how to use email, the Internet, and other technology-related skills that will help them in the workplace.

The Commission’s Business Enterprise Program (BEP) offers more specific opportunities for individuals who are blind to gain the training and skills necessary to manage one of several vending facilities located in federal and state office buildings. After completing an intensive training program, BEP managers become proficient in all aspects of retail management, including purchasing products, controlling inventory, marketing products, maintaining good customer relations, and keeping accurate records. In addition, continuing education classes are offered to all licensed program members in order to maintain and enhance managerial skills. NYSCB supervises the operation of approximately 100 newsstands, cafeterias, snack bars, and vending machine operations throughout the state.

Our work doesn’t stop at simply helping blind individuals gain or maintain employment. Additionally, in accordance with the results of the Statewide Comprehensive Needs Assessment, the NYSCB has set ambitious goals for the coming year to strive for a six-percent increase in the number of consumers maintaining or finding employment, and to continue to maintain full compliance with federal standards and indicators. OCFS is committed to identifying, addressing and reducing racial and ethnic disproportionality, and to eliminating racial and ethnic disparities in our systems of care and custody. The Commission is doing its part by working to increase the number of minority groups receiving services. NYSCB is also striving to raise awareness in the business community about NYSCB services, and improve services for individuals who are deaf-blind.

Those who are not eligible for vocational rehabilitation services may qualify to participate in Independent Living Services (ILS), which is designed to help individuals with low vision with day-to-day activities, including orientation and mobility services. The Adaptive Living Program (ALP) helps to assist people who need training and services in living at home and in the community, which allows older New Yorkers who are experiencing vision loss to function more independently in daily activities. One client says ILS allowed her to start paying her own bills, managing her own medicine, and most importantly, it helped her stay in her own home. She also was able to get more involved in her community, and she now regularly attends a support group where she can socialize and overcome obstacles with help from trusted acquaintances.

“Just because I am blind, doesn’t mean that I don’t have vision,” a client once told me. “I can do everything that you do; I just do it differently.” That statement has stayed with me for many years, and gave me a sense of purpose in my work with the Commission. All of us face real challenges every day, but it is with the help of others — and the drive to do well for ourselves — that we are propelled beyond labels to be defined only by our success.

The Apartheids that Still Remain By Marc Rosen

Marc Rosen

Nelson Mandela’s passing has marked the end of an era in the ongoing war to establish civil rights for all.  Madiba sacrificed a third of his life to his prison sentence alone, before even considering the other injustices he personally endured in the name of ending apartheid in South Africa.  However, his successes and triumphs in ending one apartheid serve to heighten and emphasize the many that still remain.  Every time I read another article portraying me and my fellow autistics as eternal children, or as creatures that only exist insofar as the burden our parents claim we impose on the family, or the growing subculture that seems obsessed with calling me and my autistic brothers sexual deviants, or yet another claim from Dr. Simon Baron-Cohen claiming that my autistic sisters have extreme male brains and implying that they’re somehow inherently transgendered, I’m reminded of the studies conducted in past decades at Harvard and Yale, attempting to claim that people who weren’t Caucasian were somehow biologically inferior, and of the many violently aggressive eugenics campaigns conducted from 1900 until the end of World War II (or in several states, until the 1980s or 1990s) many of which served as direct inspiration for the Final Solution engineered by Adolph Hitler.  Now, at a time many are celebrating the life of a great man, it is even more important to finish the work he could only barely begin.

Segregation on the basis of various protected classes may now be illegal, but even with the passage of the Americans with Disabilities Act (ADA) and Individuals with Disabilities in Education Act (IDEA) people with disabilities still face the most violent, systemic and most thoroughly embedded forms of discrimination, both in the United States and elsewhere.  Unlike any other minority class (except for terrorists or suspected enemy combatants) only disabled persons can legally be detained indefinitely without having to be arrested, arraigned, provided with an attorney, provided with due process of any kind (whether it be a trial or some sort of administrative hearing) or even told why they’re being detained in the first place!  Only disabled persons can legally be deprived of their right to make decisions about where they live, where they work, what forms of transportation they can use, what they can purchase with their money, what doctors to see, how to manage their own health, and even the right to keep, save, and/or spend their money when, where, and as they see fit, and all on the say-so of just a relative claiming to take control for their own good with no need to verify whether or not the person even needs help in the first place!  We can be permanently deprived of our access to a meaningful education, forced by school authorities to drop out of high school without being allowed to attempt to graduate, and in New York, only 35% of us between the ages of 16 and 64 have been granted access to employment that pays a proper wage, and our people face an income disparity of over $10,000 when compared to our non-disabled peers.  When the laws and economic conditions are so heavily biased against one population, it can only be described as apartheid, and those who hold the burden to act have still not done so.

The enforcement of civil rights in New York State is the joint responsibility of the Governor – who could issue executive orders to strengthen the standards under which existing law is to be interpreted, the State Legislature, who could issue laws to reinforce, properly define, and enhance the legal protections and rights that should have been in place from the start, the office of Civil Rights – which is directly responsible for prosecuting civil rights violations against New Yorkers, the Justice Center for the Protection of Persons with Special Needs (which also prosecutes in certain situations), the Protection and Advocacy program (which has the power to sue the state when necessary) and the US Department of Justice (which, if it gets involved, is a really big deal).  In some cases, the New York and US Departments of Education may also be involved if the case is within their jurisdiction.  For the most part, all of these governmental entities have done little to enforce existing law, giving opportunists a free pass to do more or less whatever they want until someone brings in the lawyers and takes them to court.

This reliance on personal lawsuits as opposed to corrective measures built into the system amplifies and exacerbates all of the pre-existing problems I could mention in education, hiring discrimination, income disparity, housing bias, and other forms of discrimination that directly hinder our ability to carry out basic Activities of Daily Living (ADLs).  Of course, keep in mind that in most cases, disabled persons never get access to an attorney, and others are often forced into guardianships of their person and property, which means they’re not allowed to represent themselves in court, and the courts are required to ignore most of what they say.  These exclusionary measures become safeguards that protect the apartheid from dismantling, and even protect it from being properly analyzed.  As a result, the status quo and disability apartheid become accepted as part of the world.

When you live in a world where your school refuses to teach you anything above a third-grade level on the basis of a label you had no part in acquiring, you might start to think this is what you deserve.  When you live in a world where charities are dedicated to raising funds to screen and abort people like you via prenatal testing that they want to develop, you might consider it a shame that the law requires society to let you live.  When you live in a world where your caregivers think that helping you means forcing you into an institution or a never-ending chain of group homes for the rest of your life where self-determination is an after-thought, you might come to understand that nobody wants your opinion, so you’re better off not thinking in the first place.  When you live in a world where you are tried and sentenced for the crime of being born, and where your parents can be celebrated as heroes and martyrs precisely because they murder you, only two choices remain.  In a world that condemns and curses you for daring to be disabled and still live, you can surrender, becoming nothing more than a breathing husk, or you can destroy the very world that dares attack you and build a better one with your own blood, sweat, and tears, even if it kills you.

Madiba was born into a world with many similarities to the one we face as autistic and disabled peoples.  When faced with the options of a living death or destroying the foundation of everything he knew, he chose the latter, knowing the risks, and knowing it was the greater and more painful burden to bear in the short term.  ADAPT activists choose to destroy and rebuild this world, one goal at a time, until all of our brethren are free.  The same could be said of the Autistic Self-Advocacy Network (ASAN), even Perspectives Press.  When Madiba made this choice, he got involved with the struggle to establish a free and equal democracy in South Africa.  When Ari Ne’eman made this choice, he took on one of the most bigoted school districts in New Jersey and won, then went on to found ASAN so that autistic people would become the voices of autism issues and so that they could successfully claim their rightful positions as the primary decision makers in their own lives.

This choice is one that every member of an oppressed minority has had to face at some point, and both choices can and will be exercised.  Apartheid, regardless of how it’s named, disguised, hidden, or integrated, will eventually bring those it affects to this crossroads.  While these atrocities can be removed from law, business, medicine, and other major fields, it’s crucial that every single person who reads this chooses to take on that greater burden, and fight for a better future, unrestricted by what those outside our world of trials believe is impossible to change.

 

It is All About the Profits! By Brad Williams

WilliamsI can remember the commercial for Mattel’s “See and Say.” The ad ran in 1973 for “The Farmer Says” version. The young boy sat on the steps to a brownstone, pointed the arrow to the picture of an animal, and pulled the string as it twirled around and voiced back, “The cow says moo.” Of course, the kid was just as interested with the duck quaking sound and the pig going…oink, oink, oink.

            Let’s travel forward and imagine this young boy, preoccupied with the pig’s noise back in the early 1970’s. In the time since, he has lived the American Dream, went to college, climbed the corporate ladder, married with a family, pets, luxury sedan and an SUV, vacations, investments, etc. He could be the head of a health insurance association, a lobbyist for their industry, or a CEO for a health insurance company. Within decade or so, this respected man will have his retirement horizon line in place and his golden parachute deployed.

            The other day, I sat down with our insurance agent. This person covers the health and dental policies. She presented the “options” available to us now that the Affordable Care Act (ACA) is in effect (i.e., “Obamacare”). I need to point out that I support the ACA because of the work we do and how there are peers who are uninsured and how many people with disabilities will benefit from the provisions related to no preexisting conditions along with mandating mental health coverage – among several other improvements.

I really admired this agent for what she was about to do because she certainly has a very difficult job and EVERYBODY must be venting their anger directly at her, which is very misplaced. She proceeded to tell me how our current high deductible plan would increase by 70% for an individual and 81% for a family. I laughed. How ridiculous and impossible! We could not “afford” the cost of the plan we currently held. The only way that we could do this type of policy would be to go down in coverage (meaning an extremely high deductible). Bottom line, if anyone became seriously ill or needed an operation, they would be in a very vulnerable position in terms of their health and finances. They are putting people at risk of being destitute due to their health care costs. I thought this was something the Affordable Care Act was trying to solve. So we went to a different type of policy, an EPO, and found that this might be a better option. I will know more in a couple of weeks. However, the brutal reality is we will have less coverage for our dollar and better remain somewhat healthy or else we will incur significant deductible and out of pocket expenses.

            Okay. So as our country moved to address some long-standing health care concerns and gaps, the health insurance companies and their infrastructure (let’s call them “the industry”) was given the task to comply and cost-justify the new plans and rate structures. Who allowed them to raise the rates to unprecedented “pig-knuckled” levels? The industry can say it is because of the expanded coverage they now have to provide and the greater number they now have to insure. There is no rational explanation for an increase of this magnitude for currently insured Americans.

An American Reality blog (posted on CNN back at the time the ACA was being formulated) sheds some light on the subject. The industry had direct input on the House bill, the President and Democrats backed off the idea of the public insurance option (competition) because the industry convinced enough people that it was a bad idea, and the Democrats included a bill requiring all Americans to purchase their insurance from the health insurance industry (to make sure that they supported the bill). And…a report released by the industry one day before the Senate Finance Committee was scheduled to vote on the bill claimed that if the bill they helped to write (the industry) became law, Americans should expect their premiums to jump to 111% over the next ten years! So the industry and politicians were all in on it and knew this day of reckoning would come.

The industry bluntly squeeze out the competition, played hard ball, and announced it all up front to cover the crassness of the political trade-off. Nobody wants the industry to fail, but what happens when health insurance companies become cash cows because of the new rate structures? They will be doing so on the backs of businesses and citizens. Will they adjust their rates down if these unprecedented increases prove to be too steep? Don’t hold your breath. It is all about protecting their solvency and profits.

In hindsight, the ACA should have included two additional provisions to help avert the shameful activity that is taking place. Health insurance companies should not have been allowed to raise existing health insurance rates more than 25% for the population of currently insured Americans. In addition, was anything set up to monitor the bottom lines of these companies, especially if large profits start coming in, and the industry ends up benefitting at record levels, doling out excessive campaign contributions through PACs to politicians? A FOX News report critical of health insurance companies identified that the CEO of AETNA insurance made $36 million last year plus several million in stock options and the CEO of Cigna made $12.5 million plus stock options.

I think Mattel should come up with an updated version of its classic toy called “The Citizen Says See and Say.” I would point the arrow to the taxpayer (who right now has empty pockets), pull the string, and listen to the toy say, “Any politician that accepts a campaign contribution from the health insurance industry is a pig in this environment.”

Don’t Ask What is Wrong – Ask How You Can Help: Becoming Trauma Informed By Patty Black

 

 

Patty2

I have alway preferred to blend into the background of my social environment.  I like to stay in the back and absorb information – this is part of my personality, a way I have always preferred to be.  I planned on doing this as I excitedly traveled to my first NYAPRS Conference in Kerhonkson, NY the week of September 9th.

The  NYAPRS 31st annual  conference  almost immediately  held up to its long standing reputation as an outstanding wealth of information and resources for New Yorkers interested in the current mental health agenda. While featuring many information packed workshops, it also had great entertainment with award winning blues guitarist Rhett Tyler, Mental Health Comedian David Grenier, and the legendary “mothers” of the mental health wellness movement all coming together on stage one afternoon to speak of the rugged terrain they crossed in the beginnings of the movement for mental health rights.      I could feel this energy buzzing throughout the conference and inside the workshops on Stigma and “Trauma Informed Environments” and again when I heard how the national Substance Abuse and Mental Health Services Administration’s (SAMHSA’s) National Center for Trauma-Informed Care (NCTIC) is currently working to build awareness of trauma-informed care and promoting the implementation of trauma-informed practices in health programs and services.

SAMHSA included the following in defining traumatic experiences: “dehumanizing, shocking or terrifying, singular or multiple compounding events over time, and often include betrayal of a trusted person or institution and a loss of safety. Trauma can result from experiences of violence.  Healing is possible.  Although exact prevalence estimates vary, there is a consensus in the field that most consumers of mental health services are trauma survivors and that their trauma experiences help shape their responses to outreach and services.”  With that being a truth, it just makes sense that someone who had been through a horrible or terrifying experinence would react or respond accordingly to the way a health care system or setting is defined. Therefore, it would make perfect sense to be sensitive to what a person may have encountered that would drastically alter their perceptions.

Trauma-informed care attempts to engage those people with histories of trauma in ways that recognize that people will have trauma symptoms and acknowledges the role  their trauma has played in their lives. NCTIC facilitates the adoption of trauma-informed environments in the delivery of a broad range of services including mental health, substance use, housing, vocational or employment support, domestic violence and victim assistance, and peer support. In all of these environments, NCTIC seeks to change the paradigm from one that asks, “What’s wrong with you?” to one that asks, “What has happened to you?”

Many brave people offered their stories and told of ways they had found hope, faith and strength again – we heard from survivors, peers, professionals, and professionals who were also survivors – others who were living lives as parents, workers, daughters, teachers, friends, etc.  There was a wonderful workshop on ending SELF-stigma and that is something that can be controlled.  After all, we can’t control how others feel about us or treat us, but we can and should work on thinking well of ourselves.  But as SAMSHA so eloquently stated above, having a trauma-informed system of support around you can be incredibly helpful and healing and the one thing to put an extremely traumatized person back on the road to recovery.

Sadly, I cannot explain away all the recent events that have made headlines or made the issues of stigma in the mental health community that much worse.  I feel horribly for the myriad tragedies in our world, from what is happening  in Syria,  to the Boston Marathon Bombers, to so many innocent lives lost for no reason.  It is horrifying when the news informs us again of more tragic mass murders and horrifying again to hear so much commentary about mental illness being the main root cause.   Yes, while there may be some people out there with mental illness who are violent, it is far more likely for many vulnerable people to become victims themselves!  Also, the term “mental illness” has never been my favorite – however, I know it is not going to go away.  There are so many nuances and variables and countless other ways to define a person.  Often, when  one gets that label, that can become their “master identity” and people have a hard time seeing beyond it to all the other good qualities and traits that define a person.  Actually, this is where ending SELF-stigma can come in handy.

In our world, there are countless murders, rapes, and atrocities that are committed by people who do NOT have a particular mental illness.   It is a cold, hard fact that many people who are crime victims and who are hurt and wounded often go on to develop “mental illness” – such as trauma survivors – and become members of this community  and it becomes a vicious cycle.  While I don’t see this cycle ending in my lifetime, I do see glimmers of hope in a better, more informed and open minded future.  I truly heard some amazing ideas at this conference and I saw hope in them, particularly in having systems become more open-minded and better informed.   The Guidebook I was introduced to at one of the sessions is a wonderful beginning resource for female survivors and those who may want to help become better informed and more aware.   Engaging Women in Trauma-Informed Peer Support:  A Guidebook – by Andrea Blanch, Beth Filson and Darby Penney (with contributions by Cathy Cave) http://www.ct.gov/dmhas/lib/dmhas/trauma/EngagingWomen.pdf

Towers Expand Their Reach at the 2013 World Dwarf Games By Clinton Brown – NYSILC Council Member

Towers expand their reach at the 2013 World Dwarf Games

Sixth World Dwarf Games in Michigan
Sixth World Dwarf Games in Michigan
     The Towers entered the 2013 World Games primarily as a basketball team, but with some last minute roster changes, the metamorphosis to a true athletic program was about to take place.  East Lansing, Michigan on the campus of Michigan State University, the Towers gathered along with over 400 athletes from 23 Countries to participate in what can be equated to the Olympics for Little People.  Over the 8 days of competition from August 3rd – 10th, 2013, the Towers would expand their horizons outside of the basketball court and compete strong in field, swimming, soccer, volleyball, badminton, table tennis, and team boccia.  On the first weekend of the games, Justin Rickert, would start the week off with an outstanding performance in the Javelin, winning gold and edging out the reigning gold medalist.  In Swimming, Nic Novicki took medals in the 25 and 50 meter race.  Monday the 5th, would set the competitive stage for most of the team events during the week, with a full day of soccer.  A consolation bracket of 12 teams would mean that with one loss, a team could potentially play 5 games in one day, more then any other DAAA national ever put on.  A random draw set the Towers up against the reigning silver medalists from Belfast four years prior and boy did they ever take them to the brink of elimination.  After starting off to a 2-0 lead, exciting the crowd and stunning the favorites for a bit, the Towers hit half time with a 2-1 lead.  The Towers had never medaled in prior DAAA national events for soccer so this would be a big win for the team to pull off.  The Towers could not light the lamp in the second half and gave up the lead shortly into the second half.  A tight next ten minutes would see the Towers relinquish their lead with three minutes to go in the game and lose their opening match 3-2.
     However despite the loss, the Towers knew that this year they had some serious game on the soccer field and immediately set their sites on the bronze medal.  Well when a champion puts their mind to something guess what happens?  You got it, the Towers reeled off four straight wins over the next five hours, against 2 USA teams, a great Britain team, and team Australia scoring a combined 23 goals and allowing only 3 goals.  A huge victory for the team, and a sign of things to come as newcomers Zach Shattuck, Stephen Olesik, and Danh Trang helped change the face of Towers soccer.  The Towers would go on to grab a Bronze medal in soccer and have helped to reinvigorate the teams enthusiasm to medal in as many sports as possible.
     After essentially a day of rest on Tuesday, Wednesday would bring the first half of basketball.  The Towers would make quick work of a USA squad to set the stage for a battle versus an Australian team that had been practicing weekly over the last few years for this.  The Towers through the three point shooting of Justin Rickert and their lock down defense would hold Australia to just 17 points while scoring 24 to edge the Aussies.  Setting up a memorable gold medal game versus the team they had beat the last three consecutive years at DAAA nationals.
     Thursday would be a day to remember for the Towers.  Volleyball captain John Horton would lead the charge organizing his troops to run through a round robin tournament like Mike Tyson in the 80′s knocking opponents out with one big punch at a time.  Like Soccer, Volleyball a sport the Towers as a team have never medaled in all, all of a sudden now a medal didn’t seem that far out of reach.  As they beat opponents, they came up against the current reigning USA National Champs, like Ali v Frazier, a heavyweight bout was about to take place.  In the first set, the Towers lost barely, going down 1 set to none.  The second set saw the Towers go down 13-8, but a comeback for the ages was about to transpire.  The Towers would come back to win 23-21 and the crowd in favor of the Towers would soon come alive.  In the rubber match set 3 the Towers would exchange right hooks with the former champs and come out victorious, sending them out of the medal bracket.  Within a few hours of that game, the Towers Volleyball team would be accept the Gold medal and become the new world champions in Volleyball.
     Friday would be an extremely significant day for the World Games as they would bring Floor Hockey to the open division for the first time ever.  Kids from the ages of 4 years old through adults would come away with smiles from ear to ear as they would get to play for the first time in the United States a great sport with competitors of like size.  What an incredible site to see and I was so proud to lead the charge and bring this sport to the forefront of DAAA.  Hopefully we will see this in San Diego and future DAAA National competitions.  The Towers would not come away with a medal in floor hockey but would go 1-1 in their two early games.
     The final day of competition would bring the last event of the week and probably the most anticipated one of them for this team.  That would be the gold medal game for open basketball.  A title that the Towers have held for the last three years.  With a re-worked roster and an opponent with a full squad, the Towers knew it would be a slug fest.  Shots were exchanged and no lead ever went over five points, however going into the half the Towers were up three points.  Both sides were playing a bit tight knowing mistakes were at a premium.  Despite going into the fourth quarter up by two, foul trouble and some offensive woes would lead to a three point defeat as the Towers would ultimately lose the game 29-26.  The Towers would come away with a silver medal in basketball nonetheless and their heads held high as they received a showering of compliments from spectators for a hard fought game.  The crowd sure as heck got what they paid for, as the bronze medal game was decided by three points as well.
     The team came away with a week of terrific memories that will last a life time and a renewed interest in Volleyball, Soccer, and Floor Hockey.  It’s safe to say that practice weekends this coming year will consist of more then just free throws and layup lines, they’ll be some corner kicks and volleyball sprinkled in their for sure.  One major take away from this week is the tremendous respect and admiration we gained for all our opponents and competitors, the hard work that everyone put in was seen out their on the field of play everyday.

For more information about how the games faired check out http://www.worlddwarfgames.org/

For more Games Coverage, check out these media links below:

USA Today:  http://www.usatoday.com/story/news/nation/2013/08/09/world-dwarf-games/2636905/

Huffington Post:  http://www.huffingtonpost.com/2013/08/09/world-dwarf-games-2013_n_3733588.html?utm_hp_ref=impact

Lansing News:  http://www.mlive.com/lansing-news/index.ssf/2013/08/world_dwarf_games_2013_sees_us.html

“It Takes a Community”….Access Board By Dave Whalen

DaveWhalen

The Town of Amherst, a large suburb of Buffalo, started a Committee on Disabilities in 2008, after a resident attended frequent Board meetings to inquire about accessibility in the parks.  Dan was not a disability advocate, by most definitions.  He did not know much at all about the ADA, never heard of Independent Living Centers, and was not connected with many people in the disability community.  He simply was facing an injustice that needed to be addressed.  In 2004, Dan experienced a spinal cord injury from a workplace accident in Buffalo.  He never had “disability matters” anywhere on his radar.

From his drive and desire, two Town Board members saw the need to not only have a committee on disabilities, but make it a law so it would never go away.  I answered the ad in the local newspaper and became a member of the committee.

Dan and I have become close friends, and in one of our many gatherings, we discussed the total lack of awareness that exists in municipal governments.  We’re not talking something missed here or there, we’re talking non-compliance and ignorance in every facet of the Americans with Disabilities Act.  We also realized that nothing existed to educate municipalities and those invested in the disability community on proper response.

In 2009 Dan’s trust funded Town Hall Training (THT), a program designed to bring together disability advocates and municipal employees (with an emphasis on ADA coordinators) with the intent to educate them on what they need to know and WHY they need to know it.

There have now been 264 graduates of THT (many of them IL employees), a working relationship with NYS Association of Towns, NYS Association of Counties, and NYS Conference of Mayors, and recognition by many municipalities of what they lack.  However, they have a desire to properly respond.

Niagara University, in conjunction with NYSILC, is making strides to imbed awareness throughout the state.  For more information, contact Dave Whalen at 716-286-7255 or dwhalen@niagara.edu to bring a THT to your region.

 

Mental Health Issues in the Media By Susan Gray

Susan Gray Guest Editor
NYSILC council member Maura Kelley opened a discussion at the May full council meeting on mental health perceptions, and the need for more dialogue.  In the wake of the mass shootings in our nation, many media outlets have put their spin on this topic.  They have turned their lenses to a minority of perpetrators of these crimes, and painted with a broad brush the entire mentally ill population as being violent individuals.

This perception does not help an already faltering system that relies on its general hospitals and prisons to provide care for our populations that are labeled with a psychiatric disability.  With the advent of deinstitutionalization, there was little done to ensure that programs and systems were in place to provide the needed support to people living with a mental illness.  Even the laws currently on the books allow for outdated and archaic treatment of people labeled with psychiatric disabilities.  Parents with mental illness can still have their children taken away from them.  Also, children with mental illness are often no better off, as parents and care-givers can restrain and medicate them without their consent.

Treatments for our peers vary in effectiveness.  Also, many people do not want the stigma of taking medications for their issues, and also do not want to experience the significant side effects that the medications may cause.  Consequently, they live in fear of being locked up and forced to take these medications.  If some do happen to present with a psychotic event, most care-givers or first responders do not know how to help them and they end up in jails or in prison.  Many people with mental disorders will self-medicate with drugs and/or alcohol to relieve symptoms.  This can often lead to a dual diagnosis of addiction, which then often leads to the inevitable path of homelessness.

Dual diagnosis for people with mental illness and addiction can mean difficulty locating a counselor or agency that is equipped to work with them.  Most agencies do not have properly trained staff to work effectively with such a unique set of needs.

As a society we have let this population down and not protected their rights and basic needs as equal members of our community, country, and world.  Instead, we highlight the minority of violent offenders among this population, and then look to gun control to solve these infrequent cases of violence.  What is required is an understanding of the real issues, and a revolution in the health care systems in order to provide care for people with  psychological/emotional disabilities.  The systems must be re-built with the vital input and assistance of people with psychiatric disabilities, because no one knows better what is needed for effective change than our peers.

Systems change is one of the things that NYSILC looks to in advancing the Independent Living philosophy for all people with disabilities.  Keeping the conversation going, and demanding a voice to tell the real story is key to our success.

Please HELP fight Mental Health Stigma – check out the following link from the Mental Health Association in New York State (MHANYS) – “Mental Health – Fact or Fiction:”

http://www.mhanys.org/MH_Fact_Fiction.php

DEAR MR. PRESIDENT: A PLEA FOR FREEDOM By: Peter S. Kahrmann

Kahrmann

Dear Mr. President:  There are at least 25 million people in this country living in slave-like conditions today. They need and deserve your help.

I do not use the term slave-like conditions lightly. If we accept the Merriam Webster Dictionary’s definition of slavery, “(S)ubmission to a dominating influence,” and or the American Heritage Dictionary’s definition of slave, “One who is abjectly subservient to a specified person or influence,” then, no question about it, millions of Americans are currently enduring slave-like status.

I am not writing to you solely to identify and outline the problem. I am writing to you with what I and others know must be the primary component of any solution designed to free these people and allow them to reach their maximum level of independence in life. If this component is enacted, millions of taxpayer dollars will be saved in the process. More in a minute.

I am talking, of course, about Americans with disabilities, of which I am proud to say includes me. (I was held-up and shot in the head in 1984 and live with the bullet lodged in the brain.)

According to figures released by the U.S. Institute of Disability and Rehabilitation Research (part of the U.S. Department of Education’s Office of Special Education and Rehabilitative Services) Americans with disabilities represent nearly 20 percent of the population, about 49 million Americans. Of those, 25 million are in or are at risk for falling into the slave-like category this missive focuses on. Many are daily told when, if, and where they can eat, sleep, wear, go, do or not do. Where they can or can’t live. While they have the right to vote, many of them don’t ever get the chance to do so and continue to be disenfranchised. When they are given the chance to work, they often work in segregated settings called sheltered workshops and are paid what by any reasonable measure amounts to slave wages. Antiquated (and barbaric) laws and regulations relieve employers from having to pay them the minimum wage.

In too many instances nearly every element of their daily life is dictated by people (in and out of government) who see us as being less than human. People who are, so they believe, not disabled. (Though, one might conclude believing another human being is less than human is a challenging condition unto itself.)

Many institutional and community-based healthcare providers see us and treat us as if we are nothing more than revenue streams. Because of this, they do all they can to keep us wedded to and reliant on a range of services that, were their intent truly to help us grow our independence, would, in many instances, diminish over time, and save millions of taxpayer dollars in the process.

Believe me, Mr. President, there is such a thing as community-based warehousing; some of those who provide services for the Traumatic Brain Injury Waiver in my home state of New York do exactly that. With little if any oversight from the state’s department of health, a department that is steadfast in its resistance to any and all input from stakeholders, providers are free to engage in community-based warehousing.

New York is not unique, Mr. President. As a result, we fear nothing will truly change anywhere in this country without your leadership, without your voice loudly and clearly sounding the alarm.

What strides that have been made for people with disabilities are often made on the misguided premise that because of our disabilities we are this poor, pitiful, vulnerable lot in need of protection. (A notion that would come as a surprise to FDR, Helen Keller, Stephen Hawking, Beethoven, and, two who struggled with depression, Churchill and Lincoln.)

With all my heart I respectfully ask that you direct your National Council on Disability to identify the disability-led groups that can carry out a nationwide review of federal, state and local agencies. While some best practices will emerge, it will reveal a paucity of people with disabilities in decision making roles. Once established, the National Council on Disability can, with its sister groups around the country, devise and roll out a plan with a mandate that people with disabilities take the lead in the design and implementation of the services they deserve to reach their maximum level of independence.

Help us help others understand that our rallying cry, Nothing About Us Without Us, applies to all who’ve had to fight and still have to fight for equal rights.

Thank you, Mr. President. God bless you, and God bless America.

Sincerely,

Peter S. Kahrmann

Peter S. Kahrmann is a writer, public speaker, and human rights advocate. Mr. Kahrmann sustained a traumatic brain injury in 1984 when he was held up and shot in the head at point bank range. He is a co-founder and former board member of the New York City Chapter of Victims for Victims, a past member of the NY State Independent Living Council, and a former board member of the Brain Injury Association of NY State. Mr. Kahrmann is also the founder of the Kahrmann Advocacy Coalition, a grassroots disability rights group. He currently resides in Berkshire County, MA. The Kahrmann Blog is available at http://peterkahrmann.com/.

Disabled Feminist Speaker is NOT Inspirational! By Patty Black

  Mom and Jess 

  This past February, I had the pleasure of attending the first in a new series of programs at the recently established “Pat’s Place,” at the Independent Living Center of the Hudson Valley (ILCHV)  in Troy dedicated to disability rights activist and leader Pat Figueroa, who passed away last April.  The event was wonderful and well-attended as the room was quite crowded by the time I arrived in the brightly lit lecture hall a minute or so after the presentation had begun.

     This arts event was a series lecture with readings from author and psychotherapist Harilyn Rousseau, who described herself as a “disabled feminist talking back” as she spoke of the new book she had written entitled “Don’t Call Me Inspirational.”  Actually, her lecture series was based on that very title and I became captivated with her the minute I sat down and began listening.  She read excerpts from her life growing up with Cerebral Palsy (CP) in a sassy, witty, and sometimes melancholy voice as she articulated the  societal limitations she had endured.  I could think of many adjectives to describe Ms. Rousseau…..spunky, witty, bold, bright…..yes, anything BUT inspiring!

     Ms. Rousseau explained her qualms about the term “inspirational” and the inherent demeaning value it held for her.  To illustrate verbally to us, she described an encounter she had at age 11 with a gym teacher when that word was first uttered to her.  Gazing at her with amazement in her eyes, the teacher loudly exclaimed words to the following effect: “OH, you got yourself washed and dressed all by yourself this morning-what a wonder-you are such an INSPIRATION!”  Well, the author could not help but think “For God’s Sake lady, I have been washing and dressing myself since I was freakin’ 4 years old!”  Of course she did not express her exasperation out loud, but internalized her sense of indignation.  She went on to explain that when people approached her with this “Inspirational” word later in life, it felt to her that this was their way of keeping her at a safe distance and not accepting her for what she was: an intelligent, capable peer who was just like them.  For her, if they took her in as an equal (like them), it created too much fear in their own minds and opened up their own vulnerabilities.  So calling her inspirational was more for the benefit of the speaker and not flattering for her in any way.  Hence, the title of her book….. I must say  that I thoroughly enjoyed her richly detailed, heartfelt, wonderfully written memoir.  Various themes from the book include struggling with an overly enmeshed but devoted mom who was disappointed in her daughter’s inability to walk “normally,” to a devious suitor who built up then simultaneously shattered her lifelong dream of becoming a Bride against the odds of her mom’s and society’s fears and prejudices.  Actually, in the case of the ill-intended “fiancé” who broke his promise to her after making her feel like the most desirable princess ever, she learned she was quite fortunate to not end up with this cad.  Actually, she came to find over time that he had betrayed her for reasons that had to do with his undesirable character rather than her disability, which had initially caused her much grief and pain.  In hindsight, she was quite lucky to land on her feet without him beside her.

     Ms. Rousseau closes her vignettes by explaining in her very unique and bold voice how she continually comes to see and accept the image in the mirror,  the same one she used to be ashamed and rejecting of.  I found her tales  entertaining and characterized by strength and endurance.  I drew a lot of hope from her richly woven life journeys….and no, I won’t call you inspirational Ms. Rousseau, but I will call you capable of provoking optimism and thought, and that is something we can all use, whether or not we have a disability!

     For more information or to purchase book, click on the following link: http://www.temple.edu/tempress/titles/2235_reg.html