A Somber Celebration of the Anniversary of the ADA

I'm not sure many people realize that the Americans with Disabilities Act is constructed almost identically to the Civil Rights Act of 1964. Both guarantee civil rights and equality in the areas of employment, public accommodation, etc. Both protect oppressed and historically marginalized minority groups. Both took hard-fought battles to become enacted into law.

It's not a coincidence by any stretch of the imagination; the early pioneers with disabilities who fought for the ADA and integrated life in the community outside of institutions prior to the act being passed modeled our struggle for freedom after the civil rights movement of the African-American community. We watched Dr. King and other African-American leaders organize nonviolent protests and civil disobedience to fight for equality and, eventually, civil rights protection.

Many of us watched from the confines of the institutions we were incarcerated in and slowly grew hopeful that maybe we could organize and fight for the same freedoms and protections. Imagine, civil rights protection under the law; unheard of at the time. People with disabilities had no rights and, as a result, were systematically excluded from community life; most of us were unable to live in the community, there was no right to a public education, hardly anyone had a job of any type, public and private businesses were largely inaccessible, neglect and abuse in state-funded facilities was common and there was nothing we could do about it – it was just that simple.

People with disabilities were hungry for freedom and the African-American civil rights movement gave us that spark of hope that we too could fight and eventually get civil rights protections. Little by little, we did just that. In my opinion, when the disability rights movement and the independent living movement joined hands in the struggle for freedom, that was the nexus that helped develop the "field operation" that was the engine that organized and fueled protests and actions that pushed the Congress to pass the ADA and president George H.W. Bush to sign it.

I could go on and glowingly talk about the gains we’ve made as a community, and we have made many, but like our African-American brothers and sisters, we are still under attack and still, by and large, poor and discriminated against daily. In fact, the majority of African-Americans that have been murdered by police in recent years are people with disabilities. The Civil Rights Act and the Americans with Disabilities Act were monumental achievements in modern history but the struggle for equality and our rightful place society feel more like wishes than reality.

As we celebrate the 26th anniversary of the ADA around the country this month let us not forget that so many of our brothers and sisters are still rotting away in nursing homes. Let us not forget that we are the largest and poorest minority group not only in the country, but in the world. The overwhelming majority of our people are unemployed and on public assistance; we're in an intergenerational cycle of poverty and dependence. We must collectively raise the bar of expectation for ourselves and fight against systemic oppression simultaneously. The so-called ADA generation who have grown up not knowing what it's like to live without civil rights must carry on the fight and push for a better tomorrow with vigilance and urgency.

The torch has been passed and the future is in your hands.

I'm never going back to living in an institution

The chickens have come home to roost. When the Department of Labor issued its Overtime ruling in June 2015 it was widely believed that the viability of Personal Assistance Services nationally was in serious jeopardy. Now, with some 10 months to settle into state Medicaid agencies, we are witnessing a full scale attack on the programs that we’ve fought for and built over the last 40 years.

New York, Texas, California, Illinois and soon Massachusetts PAS programs are on the chopping block for governors and legislatures to "find savings" by capping hours, prior authorizing services and hours, increasing difficulty of program eligibility and other measures that will result in less attendant hours and a more onerous and less responsive state Medicaid program. The carnage has just begun.

The new FLSA rules have required that the Massachusetts Medicaid program pay approximately $1 million more per month for overtime pay. Policymakers argue that this rapid growth in the program is not sustainable. They have a point! The question is what is our response as a community? There certainly is a strong civil rights position thanks to Olmstead. There is also a cost argument when comparing institutional living versus community living.

Bureaucrats and legislators are generally penny wise and pound foolish and just glaze over when you talk about the incredible amount of money that's saved when somebody leaves a nursing facility and uses PAS in the community. When a state is hemorrhaging Medicaid money now, they don't think long-term.

By default, if nothing else, the answer is that it's our civil right to live outside of an institution and it's the states responsibility to pay for the services we use. The rub is, what's reasonable. What do we demand as a reasonable level of service that meets our needs to live a quality life? Whatever the outcome, we need to move quickly to mitigate against the changes that have already been made and stem the flow of future attempts to gut the program.

I've been using state-funded PAS for the past 31 years to live outside of an institution. Prior to the Massachusetts PCA program in 1974, I lived for 7 years in institutions and I'll never go back. I'm going to do anything it takes to fight off unreasonable restrictions that jeopardize my independence and that of over 25,000 other people with disabilities in the state.

Our voices will be heard and we will prevail!

Back together with Eric Neudel and Alison Gilkey on an exciting new project

I've just agreed to join my friends Eric Neudel and Alison Gilkey, principals of Storyline Motion Pictures (known in the disability community for Lives Worth Living and the Great Fight for Disability Rights) on their latest project which is a Disability Rights Museum on Wheels. The mobile Museum will travel around the country highlighting areas such as eugenics and the people who fought against this movement; modern disability rights; emerging technologies and a look at post ADA legislative and judicial advancements in disability rights. Great to be working again with such creative and committed visionaries.