Make this Election Count With Emily Ladau

emilyladau_headshot2016-002This guest post is a link to a video created by Emily Ladau, on the importance of candidates discussing disability in a meaningful, substantive way. Emily is a recipient of the New York State Independent Living Council’s Patricio “Pat” Figueroa, Jr. sponsorship. The sponsorship was created to help dedicated young adults with disabilities who have demonstrated leadership skills. Ms. Ladau was recently elected the first ever youth member-at-large to the National Council on Independent Living in Washington, D.C., and the sponsorship will help make her participation possible.

Emily Ladau is a passionate disability rights activist and digital communications consultant whose career began at the age of 10, when she appeared on several episodes of Sesame Street to educate children about her life with a physical disability. A native of Long Island, New York, Emily graduated with a B.A. in English from Adelphi University in 2013. She is dedicated to harnessing the powers of communication and social media as tools for people of all abilities to become informed and engaged about disability and social justice issues.

All of Emily’s activism is driven by her firm belief that if we want the world to be accessible to people with all types of disabilities, we must make ideas and concepts surrounding disability accessible to the world.


New Bill Introduces Hope for Community Based Living to Become a Civil Right







Disability rights group ADAPT has long been advocating for the needs of people with disabilities in institutional care to have access to home and community-based services.  These services are much more desirable for people so they can have their independence and lead satisfying lives right among their own family and friends.  A big step in a positive direction has been taken with the introduction of a new Bill in the Senate this January that would guarantee equal access to this much more desirable type of care.

Senator Charles Schumer (D-NY) introduced a Bill that would make it easier for people with disabilities to receive care at home and keep them out of more costly nursing homes and institutions.  This bill is called the Disability Integration Act, and under it health insurance companies would be required to cover the cost of caring for people with disabilities in the comfort of their own homes.

The law currently provides financial care for people with daily living needs such as washing, dressing, eating, and other necessary activities.   This care is insured only if they are in institutions or nursing facilities.   However, the more desirable and less expensive option of home-based care is very difficult to achieve.  There are often very long waiting lists, caps on services and other circumstances that would hinder a person’s access to home-based care.  Under the new Bill, these blocks would be removed for people so they would be able to live and thrive in their own homes.

Senator Schumer was a co-sponsor of the Americans with Disabilities Act, which celebrated its 25th anniversary just last year.  It seems in keeping with that anniversary that this bill should now come forward.  Schumer called the current situation of rampant institutionalization a “crisis.”  He also stated that, “We cannot go back to the days of warehousing people in institutional care models, nor can we expect that everyone will live with their parents forever.”   The bill would apply to both Medicaid and private long-term insurance care.  It stipulates that states would be eligible for an increase in the federal funding for their Medicaid programs if they comply within a certain time period.

At this time, there are still thousands of people trapped in institutions and movement on this Bill could serve as a beacon of light for their futures.  Advocates at ADAPT said the Bill would be a huge step forward for all of us by finally making home and community based living what is should be – a civil right!



Governor Cuomo and the New York State Medicaid Waiver Law By Ralph Giordano










The following brief essay from former NYSILC Council Member Ralph Giordano is a response to Peter Karhrmann’s recent blog post rebuking Governor Cuomo and the Department of Health on their TBI Proposal.

Governor Cuomo and the Department of Health (DOH) have put forth a managed care program for persons with Traumatic Brain Injury (TBI) under the NYS Medicaid Waiver Law.

In today’s world there is no longer a need for blanket managed care.  We now have the human, technological, public and private financial options to allow all but the most dependent persons with TBI’s to live in the community.  The DOH and the Governor seem to be seeking to roll back the clock to a time before the 1970’s before deinstitutionalization occurred.  Now, It could be reasonably argued that too many homeless disabled persons languish on the streets, but this is due to their being denied treatment services, housing opportunities and care giving options.  It is perplexing to hear that New York State wishes to employ managed care which is quite dated, close minded and restrictive.  Much more viable options can be created at a lower cost by carefully matching the client to his/her community, cognitive and physical abilities and medical and prescription requirements.  In addition, the client should also have opportunities for enhancing their daily activity.

This new program being proposed that denies freedom of choice must be altered to ensure that in 2016 and beyond that services for those with TBI continue to provide mandated opportunities that allow this population to live and thrive in their own communities.

Happy 25th Anniversary to the ADA! By Patty Black

ADA anniversary 2015






July 26, 2015 marked the official 25th anniversary of the signing of the landmark legislation, the Americans with Disabilities Act (ADA).    The nation has worked hard over the past 25 years to end discrimination against people with disabilities.  To celebrate the sense of pride over the changes that have been achieved as well as to keep the public aware of the remaining challenges, organizers were busy preparing for this silver anniversary. Many took the time to remember and celebrate by hosting parades and celebrations.  Cities including New York, Philadelphia and Chicago held disability pride parades, and all of the celebrating and excitement is excellent news for a community which has often been historically overlooked and underrepresented.

In New York City, the first of what will be an annual parade was held on Sunday, July 12, 2015 where thousands of participants proudly marched.  This parade had people walking, rolling, and scooting down Broadway from Madison Square to Union Square after New York City Mayor Bill de Blasio opened the event.  Mayor de Blasio spoke about his pride in NYC for being a national leader in supporting the rights of persons with disabilities.   The parade was named “Inclusion, Awareness, Visibility” and although it was a joyous celebration marking a historic event in the lives of our peers, there were certain barriers remaining that needed to be addressed.  Former Senator Tom Harkin, who was an author of the ADA and has been a longtime champion in the disability rights community, spoke on some vital matters.  He served as grand marshal of the parade and talked about the important progress made towards accessibility, yet also pointed out the alarmingly high unemployment rate for people with disabilities and the need to continue advocacy.

One difficulty facing some New Yorker’s who wanted to march that day was that the nearest subway station did not have an accessible elevator.  However, the Metropolitan Transportation Authority (MTA) had arranged for special pickup and drop-off spots for Access-A-Ride and advocates noted that the current accessibility issue is being addressed.  Kevin Ortiz, agency spokesman of the MTA, said that they are set to have 100 accessible subway stations by 2020.  Also, Edith Prentiss (a former NYSILC council member) and transit and disability advocate, suggested that it would be wise to remain patient with slow advances in accessible travel in NYC.

The parade was as an excellent opportunity for advocates to be vocal and open about the changes they hoped for.  Some held signs with slogans  stating the need for law enforcement officials to stop using violence against disabled people, others had signs of unity that declared “we are better together,” and others held ones that asked for more access to public housing and transportation.  One disability activist named Aron Kay summed up the hope, strength and empowerment that comprised this day.  He commented in the New York Daily News, stating that “this parade is a springboard to a goldmine of political action…we must take the good fight into our hands so we achieve our goals of pride, interdependence, and the realization our rights don’t get shoved under the bus!  I feel the rights of the disabled should be an issue with the coming presidential election….”  His words spoke of the changes we still hope to see in our community.  In accordance, some excellent political changes coincided to honor the 25th birthday of the ADA!  These were two vital pieces of legislation that Governor Andrew M. Cuomo signed for the State’s support of people with disabilities, and they were finally signed after two decades of effort by advocates including Frank Pennisi.  One was a law (S.1405) that was sponsored by Senator Carl Marcellino that clarified that it is discriminatory for an operator (public or private) to refuse to remove certain architectural or communication barriers in their areas.  It also eliminated the exception for the barrier removal requirement for public libraries.  The second major piece of legislation signed on this day was A.7766.A which was sponsored by Assemblywoman Aileen Gunther.  This law directs the NYS Office of People with Developmental Disabilities (OPWDD) to examine state laws and regulations pertaining to military family members and offer vital improvements so those laws will better serve these families of people with developmental disabilities.

Finally, there was a celebration in West Capital Park in Albany on July 24 to commemorate and this event featured red, white and blue balloons and “Happy 25th Anniversary ADA” banners displayed around the park, along with cupcakes and the musical ensemble Flame.  This group features 10 talented musicians from upstate New York who also have various disabilities.  Flame has played for a wide variety of audiences from all four corners of the continental United States and has released 4 CDs.  They performed many wonderful songs for the event, which was opened by Roger Bearden, General Counsel for the OPWDD.   The program featured prominent people who spoke of the advances they had seen in the lives of people since the ADA was signed into law back in 1990.  NYS Assemblymember Patricia Fahy commented on how the law has notably affected mainstreaming in schools for all students, and how integration and assimilation is now commonplace.  Jim Weisman, President of United Spinal Association, spoke about accessible transportation and the changes made over the years as paratransit became part of the ADA.  Some of the other speakers included Kerry A. Delaney, OPWDD Acting Commissioner and disability advocates Shameka Andrews, Letisha Comstock and Tony Phillips.  Their words symbolized just how vital the ADA has been in bringing about many necessary changes in our lives that we did not have before.  They spoke about its impact and how life has changed for the better since it was enacted.  One advocate has a fully accessible apartment and also noted how mainstreaming in schools had been important to her own success in life as an advocate and speaker for others.  Another pointed out how we have changes we take for granted such as sidewalk curb cuts and accessible vehicles, as well as disability centers at colleges that have allowed her to attend and find success and will pave the way for future students with disabilities.

It was clear from listening to the speakers that we while we may have more changes and barriers to overcome, we have surely come a long way from where we were 25 years ago since the ADA was signed into existence!



Chores By Brad Williams


It is that time of the year. Time to buckle down and get busy. I’m not talking about spring cleaning – nor am I referring to the hours of yard work ahead of us after a long winter. Instead, in the realm of SILC-dom, it is a state plan year.

Subsequently, NYSILC has prioritized its committee work for 2015. So our task at hand will be to engage our committee structure. Of particular interest are the Needs Assessment and Statewide Plan for Independent Living (SPIL) committees.

The Needs Assessment Committee, or NAC, will review existing data, conduct surveys, and compile the information into a report to identify priority areas important to independent living. The SPIL Committee will re-tool the formulation process to accommodate changes enacted by the Workforce Innovation and Opportunity Act (WIOA). The committee will then work to provide a process to obtain input on the next IL State Plan for 2017-2019 in the fall of 2015.

How can you help? Be an active participant in the process! First, when the NAC distributes surveys, please respond and give us your feedback. You can also help by redistributing the survey to others to expand the potential number of respondents. Second, this September, NYSILC will announce the various ways you can provide input about the next IL State Plan for 2017-2019. Please comment. Look for correspondence, check in with your local ILC, and or monitor the NYSILC home page at for details.

Like a lot of chores, the effort that you put in will directly translate to the satisfaction you feel in the end. Your active participation in this process will help to define our priorities!

On Recent Events… By Brad Williams December 2014/January 2015

Williams The African American community has been joined by many citizens in expressing concern at two unrelated, but similar instances resulting in the deaths of unarmed citizens, Michael Brown and Eric Garner, at the hands of police. The outpouring of concern was followed by prayer at churches across the country. Broad support is turning out to draw attention to this issue. The effort exposes the seemingly near impossibility of indicting a member of law enforcement for their actions. In the calls for justice, there has been recognition for mandatory training and increased diversity on police forces.

Recently, New York State Attorney General Eric Schneiderman outlined steps to restore public confidence in the criminal justice system. He sent a letter to Governor Cuomo requesting an interim executive order to direct the Office of the Attorney General to investigate and, if necessary, prosecute cases involving unarmed civilians killed by police officers.

As this issue gets addressed, it will be important for the Attorney General to consider other protected classes in these matters, such as people with disabilities. In Maryland, a recent headline ended in a death by law enforcement of an unarmed man, Ethan Saylor, a young man with Down syndrome. He wanted to see a movie for a second time when police were called to remove him. Because of his size, three handcuffs were used and he was subdued face down on the ground and left unattended. He was not able to breathe and died of asphyxia. A Grand Jury did not indict the officers. Link to article:

In California, Jonathan Meister stopped by a friend’s house to pick up snowboarding equipment. He waited outside. A neighbor called 911 believing it to be suspicious. The police approached Jonathan but he couldn’t hear or respond because he was deaf. He dropped boxes to use his hands to sign. They restrained him, but he broke free, jumped a nearby fence to use it as a barrier, so he could use his hands to signal that he was deaf. The officers promptly pummeled and tased Mr. Meister unconscious. Link to article:http: //

In both instances, knowledge about their particular disabilities could have helped to avert the situations. As mentioned earlier, part of the answer is to increase diversity on police forces. Even as this continues to be improved, training efforts will have to be increased and prioritized. In our state, the First Responders Training Program based at Niagara University is making progress to help promote disability awareness on this subject. Link to website: Dave Whalen is a council member and has been busy training a wide variety of police and fire departments, counties, and other stakeholders. In 2014, Dave facilitated four train-the-trainer sessions with law enforcement in Erie, Essex, and Monroe Counties as well as a state conference. Seventy trainers from thirty-seven departments participated. Below is a recent testimonial related to his trainings:

“I just wanted to take the time to thank you for the training over the past couple
of days. Dave clearly has a passion for the work that he is doing and it is evident
in the way he presented the material. I have attended quite a few trainings in the
11 years I have been doing this job and this one ranks right at the top. This is a
topic that I didn’t realize covered so much and is so important to our jobs every
day. So on behalf of the Geneva Police Department I would like to thank you for the
opportunity to pass along this important training to the officers of the Geneva
Police Department.” – Sgt. Michael Passalacqua, Geneva (NY) PD

In early August of this year, I met my civic obligation and served on a jury for a week-long trial in county court. The jury selection process was like organized chaos. When we were seated as a jury, the judge was very clear in his directions about the case and the limitations that shaped the parameters related to the charges. As we listened to witnesses and were presented with evidence, it raised several questions. Such as, “Why was the inmate going through detoxification in a cell? Shouldn’t he have been under medical care first, then returned to a cell once stabilized? Was his “behavior” really in reaction to their “authority,” or was it more the “side effects of his withdrawal?” Apparently, this thought process was off track and not within the scope of our specific instructions. In the end, given the instructions we were given, our jury found the inmate guilty of the charges.

I met my civic obligation, but my service on the jury gave me a glimpse of how exact, restricted, and narrow our court system is structured. Does it provide justice? Perhaps more so than other countries; but how do we address injustices and recognized trends or issues such as the one before us? Here are some truths:

• The demographics in our country are changing. Non-whites will become the majority by 2043. We need to embrace this change and understand that there is strength in diversity. I hope I live long enough to witness this transformation.

• Despite recent events, people should not look negatively at police officers. They provide a vital service for our communities. There are many positive, dedicated people in law enforcement. I personally know and am friends with several. Some have been my friends since junior high; others live in my neighborhood. Their effort will be needed to help make this change.

• This issue is not new. Recent events are raising it to a level where something needs to be done to make it a priority! Activists, members of all communities, and the media need to continue to increase awareness so that political leaders work with law enforcement and the criminal justice system to identify and make change occur to have a lasting impact on this issue for the African American and other communities.

Searching the Portal Through the Second Floor By Brad Williams


I watched the Ken Burns documentary on the Roosevelt’s and was taken by their leadership and commitment to social issues impacting people on the domestic front, despite the advantages of their upbringing and individual differences.

Theodore Roosevelt, a Republican and former Governor of New York, pursued a “Square Deal” domestic program when he was President. It led to the conservation of natural resources, control of corporations and consumer protection pushing the agenda to more progressive issues.

Franklin Roosevelt, also a former Governor of New York, got “New Deal” legislation advanced through Congress during his first two Presidential terms establishing programs that would provide relief to millions of unemployed Americans. Unemployment decreased from 25% to 2% over his time in office. Social Security, the Securities and Exchange Commission (SEC) and the Federal Deposit Insurance Corporation (FDIC) still exist to this day. FDR was a Democrat who led our country through a depression and a world war.

Eleanor Roosevelt, Teddy’s favorite niece and FDR’s wife, was the moral compass for Franklin. She was an active volunteer and supported a wide range of organizations during and beyond her time as First Lady that were not limited to the Red Cross, League of Women Voters, National Youth Administration and the National Association for the Advancement of Colored People (NAACP).  After FDR died in office, she was appointed as the US delegate to the United Nations and continued to work on humanitarian issues.

I found it interesting that the amazing success and impact of the Roosevelt’s were initially funneled through the portal of New York’s Capital. There must be something about Albany politics and the “second floor” where the office of the Governor is located that provides an opportunity to do great things for constituents and people in need.

In the fall of 2013, the New York State Independent Living Council (NYSILC) sent a letter to New York Governor Andrew Cuomo that urged him to prioritize an initiative in his upcoming State of the State address to improve the employability of people with disabilities similar to the National Governor Association’s (NGA) “Better Bottom Line.” The letter identified the 31% employment rate, near 30% poverty rate and $12,600 income gap faced by New Yorkers with disabilities and called for an overarching goal with specific targets and strategies to implement the plan.  A petition gained the support of 1,500 signatures. Stakeholder support came from the New York Association on Independent Living (NYAIL), New York Association of Psychiatric Rehabilitation Services (NYPARS) and the New York State Self-Advocacy Association (NYSSAA).

During the State of the State, the Governor did identify support for veterans with disabilities but nothing related to the “Better Bottom Line” or the overall need. However, the “second floor” reached out to NYSILC and made a commitment to meet with advocates on the issue in 2014. The first item established and confirmed was the need. Concepts and potential strategies were discussed in detail over a series of meetings.

In late August, the Cuomo Administration announced the launch of an interactive online portal for state job seekers who are veterans or people with disabilities. This action bridged both groups and was one strategy out of many, to address the issues. The online portal put a process in place to identify the positions currently available for individuals classified as 55-b (people with disabilities) and 55-c (veterans with disabilities) by making it interactive and allowing candidates to indicate interest in employment by providing contact information; academic background; occupational, employment and geographic preferences; and employment history and upload a resume.

Any State agency can then be more responsive in getting back to candidates. These entry-level positions provide access to multiple ladders including management. For more information on disability certification eligibility requirements and available positions, go to the site at

On September 17, 2014, Governor Cuomo issued an Employment First Executive Order #136. It prioritized the employment of New Yorkers with disabilities and committed to increasing the employment rate and decreasing the poverty rate by 5%. The order empowers a commission to start working on solutions to facilitate peers to meet the overall goals by March 2015. Click here to read the official press release and executive order.

The portal through the “second floor” helped to launch the national aspirations of the Roosevelt’s. Many Americans benefitted as a result of their actions. Who knows what this “second floor” portal could do for Andrew Cuomo. What would he accomplish on the national scene? New Yorkers with disabilities are grateful for the Governor taking the lead on this priority issue. Early estimates of the 5% targeted in the Executive Order suggest a potential transformation for up to 60,000 New Yorkers with disabilities. What will this mean to these peers to move out of poverty and be employed – to the quality of their lives and the overall economic impact? Will they use the online portal? How will it change their futures and that of our State and Nation?

Life for the Disability Community: Yesterday, Today and Tomorrow By Ralph Giordano, NYSILC Council Member

Over my lifetime (1943 to the present), I have witnessed many wonderful changes for the better regarding positive events that have improved the lives of persons with disabilities (PWDs). Medical breakthroughs like the Polio Vaccine and Penicillin have eliminated some infectious diseases that can cause permanent disabilities and the effects of some diseases like Tuberculosis.

I grew up with a number of friends from 1949 – 1957 at the Branch Brook School in Newark, New Jersey for children with orthopedic and physical disabilities that did not result in serious cognitive loss. Except for not including any non-disabled students, this school was far ahead of its time due to New Jersey mandating special education services in the state. Branch Brook employed generous programs in OT/PT and speech therapy to augment our special education program. We also had a wonderful Assistant Superintendent for Special Schools, Dr. Elizabeth M. Kelly, who administered Newark’s entire special education program which included at least 6 special schools and a number of additional services in regular K-8 as well as the high school buildings. Despite Dr. Kelly’s many duties, she knew the name of every child in her program. Branch Brook had students with Post Polio Paralysis, Cerebral Palsy (my condition), visual impairments, legg calve perthes, amputations and conditions manifested through accidents or criminal attacks.

Due to President John F. Kennedy’s concerns for his developmentally disabled sister Rosemary, the major national movement for federal legislation removing discrimination against PWDs began in earnest in the early 1960’s. This resulted in the passing of the Rehabilitation Act of 1973, Education For all Handicapped Children Act of 1975 (now renamed The Individuals with Disabilities Education Act or IDEA) and The Americans with Disabilities Act of 1990. Amendments to these and new laws continue to this day.

Another big factor that is aiding PWDs are everyday advances in technology derived from space exploration, computer technology and other initiatives. I remember using the prototype IBM electric typewriter in the 1950’s. Assistive Technology ranges from simple tool alterations to complex new inventions along with ongoing barrier removal. One future innovation spoken about lately are cars that can be programmed to drive themselves. This will be a boon to the elderly and PWDs who do not drive.

We have made admirable gains in improving the lives of PWDs since the 1940’s. This has not been a perfect line of progress. Laws have predictable or unintended consequences such as creating legal traps that pour money into the court and law firm systems taking resources from PWDs. A glaring example is the not yet completely settled Jose P. v Mills Special Education case in NYC, commenced in 1978 due to many children not receiving special education services. One thought is to attempt to eliminate a community’s sense of being overwhelmed by a legal mandate despite being given a grace period to comply with it.

I have some thoughts on what we must we do to sustain our gains over the past seventy years to further improve the lives of PWDs. Empirically, we need world-wide and national stability without catastrophic natural disasters, economic crashes, and civic stability with a minimum of strife and unrest from war and other international disagreements. Advocates among us need to remain continually diligent in formulating legislation or seeking redress in court for actual, not perceived policies that harm PWDs. These efforts need to be augmented with ample research and visibly persuasive documentation.

As I am a pre-baby boomer who grew-up in tough talking Newark’s Industrial East Side with the nickname “Down Neck,” I am not a huge supporter of trendy “Politically Correct” language changes that seek to eliminate perfectly good words from the dictionary as being offensive. This can lead to distracting political whining that deters the real work of building more ramps and other forms of barrier removal. These concrete actions will lead to more satisfactory percentages in employment, education, civic participation, financial independence, freedom to worship and recreation for PWDs.

Those of us living with disabilities know that life is not Sesame Street, with its quick glossing over difficulties to mercifully and temporarily shield young children from reality. Let’s continue our advances and pass them on to future advocates so that PWDs may enjoy an increased degree of life’s enjoyments and join the fun with the jovial “Big Bird” within all of us!

Multiple Pathways to Graduation By Zach Garafalo, Assistant Director, YOUTH POWER!

ZG professional headshot

The New York State Independent Living Council (NYSILC) recently released its 2014 Public Policy Agenda. The framework for the agenda is guided by feedback received from the Statewide Needs Assessment conducted in 2012.

Of particular concern for all young people – and specifically students with disabilities, young English Language Learners (ELL) and other vulnerable school-aged populations – are the unnecessary obstacles to obtaining a high school diploma.

The allure of the American public education system is its guarantee of a free and appropriate public education that prepares students to be college and career ready. An American education should position students to be informed participants in civil society and active contributors to the globalized economy.

Unfortunately, the allure is superficial. New York is failing its most vulnerable students. In New York State, one in four students will not graduate within four years. For at-risk students, the outlook is considerably more desolate. Traditionally disadvantaged populations such as Black (58.1%), Hispanic (57.8%), students with disabilities (44.7%), English Language Learners (34.3%) and economically disadvantaged students complete high school within four years at significantly lower rates than their non-identified peers .

Let me be clear. In no way are we advocating lower standards. We want our schools and teachers to be among the most effective in the country, our students well equipped to take on college, work and life, and a meaningful diploma that embodies the ideals of the Empire State. We can fulfill the promise of all that is New York while creating opportunities for many more young New Yorkers to thrive. To do this, we need to move our educational system toward a new New York. A philosophy of learning that is premised on the fundamental belief in the potential of every student. An education that embraces individuality over conformity. And multiple high quality pathways out of high school that are measurable, performance based and aligned with the Common Core.

Under the No Child Left Behind (NCLB) Act, states are required to assess high school students in reading, math and science. However, states are not mandated to impose testing as a pathway to graduation . Standardized testing offers only a limited glimpse into a student’s mastery of a subject. Standardized tests were designed to rank us. Today, they are used as barriers to independence rather than bridges to the American dream.

There are replicable models in NYS that allow students to “learn by doing” outside of the traditionally academic environment. However, students must still pass exit exams to receive a high school diploma. Career and technical education that gives students the skills to pay the bills must be promoted as a valid and equally prestigious alternative to the traditional academic model.

The Board of Regents must embrace initiatives that enhance deeper learning and promote the development of performance based assessments. Deeper learning prepares students to be college and career ready. Deeper learning teaches students to think critically and solve complex problems, work collaboratively, communicate effectively and be self-directed and able to incorporate feedback . These alternatives, such as portfolios, will allow students to demonstrate the skills they have mastered without the high pressure of the Regents exams.

The Independent Living, disability, immigrant and youth rights movements need to unite to pressure the Board of Regents to create pathways to prosperity rather than pipelines to poverty.

Are you or someone you know a young person who wants to change the system? YOUTH POWER!’s Action Working Group is launching a campaign to raise awareness around the lack of meaningful graduation options for students with disabilities. Join us. Speak up and speak out. Your voice matters:
You can also get involved with NYSILC’s Youth Leadership Subcommittee:

If you are a concerned advocate or ally who wants to make sure all young people have the opportunity to demonstrate their true potential, join the Coalition for Multiple Pathways to a Diploma here:

“To Autism Speaks” By Marc Rosen

Marc Rosen

Marc Rosen is the co-editor of the Perspectives series of poetry anthologies focused on the subjects of autistic, disabled, and neurodivergent culture. “To Autism Speaks” is one of the flagship poems of the first volume in the series, written in 2009 as a summation of most of the major grievances held by the majority of autistic people against the named organization, including, but not limited to, their blatant refusal to include autistic people on their board of directors and other decision-making entities (with one prior tokenistic exception whom they mostly ignored and/or mocked), their insistence upon starting from the base assumption that autism and autistic people are a burden/disease/problem which is best solved through utter eradication, their refusal to acknowledge that autistic adults exist despite the fact that autism itself has existed as a label in one form or another since the 1920’s, and their viral transmission of fear, paranoia, and discrimination in the name of “awareness.” Marc himself is autistic, and “suffers” with an incurable nausea every April 1st, ever since Autism Speaks decided to usurp it as “Autism Awareness Day” without consulting a single autistic person.

You say “We have to find a cure!”

A cure? for what?
Is it a cure for who I am?
My personality?
My hopes?
My dreams?
My Passions?

Is it a cure for what I am?
My intelligence?
My wit?
My charm?
My sarcasm?

Is it a cure for what I can be?
My ambitions?
My interests?
My perseverance?
My goals?

If not any of those, then what do you hate?
Is it because you hate my differences?
My beliefs?
My morals?
My ethics?
My strength?

Is it because you hate that I’m not you?
Is my difference such a crime that it must be destroyed?

Better yet, can you tell me WHY?
Why do you hate me?
Why can’t I exist as I am?
Why do you have to “cure” my healthy mind?
Why do you have to treat me as inhuman?

Who are you trying to help?
Is it the fetus you screen out and abort for having the wrong genes?
Is it the child you yell at for being “wrong” in ways he’ll never understand?
Is it the adult you allow to die though your silence?
Is it the hole in your heart which you stain with your cruelty?

Do you blame a vaccine for my existence?
Am I some freak of science who has no right to exist?
Am I nothing more than the shadow of your own twisted heart?
Do I only exist to remind you that you can’t live your life through mine?
Do I hold any value to you other than as a symbol of all you hate?

Or is it just that you fear that you are one of my brethren?
That the very things you have spoken of as filth and disease,
Could actually hold purpose, value, and worth?
Would I then be nothing more than your horrifying fun-house mirror?

These questions I pose to you, oh all-knowing “normal” people
You say you speak for me, so why not give me some answers?

Previously published in Perspectives: Poetry Concerning Autism and Other Disabilities (anthology, published by Local Gems Poetry Press, 2010) and Monster of Fifty-Nine Moons and Other Poems ( (Marc Rosen, published by Local Gems Poetry Press, 2012)