Disability Equality is Still Elusive

The following article was originally written by Amy for the New York Times Op-ed session; however, it was never published.  Amy states, ” as usual, the NY Times ignores our voices.”

The Americans with Disabilities Act will be 25 years old in 2015. How much progress have we made in accessibility? Do Disabled people today have equal rights and equal opportunity?

If you are non-disabled, your answer to the first question is probably an enthusiastic “yes”. The second question would probably confuse you. Only people who are Disabled, or who are involved with the disabilities rights movement, would not hesitate to answer the question with a firm “no”.

About accessibility: at first glance, it is apparent that a lot of progress has been made. The ramps, automatic doors and curb cuts are everywhere; blind people have many audio books and screen readers available to them; institutions are closing; Disabled children have the right to an education.

But isn’t this progress simply the basic rights we should expect as human beings? The right to dignity, the right to move freely, using wheelchairs or not, the access to reading material available to non-disabled, those things should not require legislation.

The reality though, is that after 25 years, obstacles and lack of ramps and curb cuts are still everywhere. In some places, improvised ramps make it unsafe for some of us to wheelAmy Nytimes ourselves. Airports don’t comply, service animals are forbidden in some places, public events organizers don’t provide American Sign Language interpreters, and students still don’t have access to a meaningful curriculum; and despite the closure of the warehouse institutions, many Disabled people still receive undignified institutional care.

We are continually deemed incompetent, forced to live under guardianship, not always with guardians that have their best interest in mind.

How about equality and opportunity? This is even worse. Disabled people have few options on affordable housing; marriage becomes impossible because the meager government financial assistance is denied when a couple with intense needs is said to have “too much money”. They have to either remain unmarried, in different houses, or lose important services, like a personal care assistant; businesses can pay us cents per hour for the same work a non-disabled person does. These businesses receive subsidies from the government to provide work experience for Disabled people, but the situation is one of labor exploitation.

Developmentally Disabled people, like me, are often denied a voice in several self-described “advocacy” organizations. We, our diagnosis, are used to raise money through messages of pity, despair and even hate. We are accused of bankrupting the country; we are referred to as “sufferers”. When we say our disability does not cause us suffering, we are then accused of making our families suffer.

Instead of being accepted and valued, we are put through expensive, sometimes dangerous, so-called treatments that are supposed to “fix” us. This if we are lucky enough to be born, instead of being discarded as too undesirable. Some non-disabled are even proposing infanticide of Disabled newborns. Eugenics is where most of research money involving developmental disabilities is spent.

Even the way we choose to refer to ourselves is denied to us. For the ones among us who are Disabled and proud, and identify as such – in my case Disabled, Autistic and proud – we are constantly chastised for not using “person-first language”. It is as if being Disabled is shameful and demeaning, as if it is not obvious that we are people, human beings.

All this, and more, is our daily experience in the United States, 25 years after the ADA became law. But none of it is as bad as how the media portrays us, if the media bothers to remember us as a minority. For all the support for the civil rights of minorities, the media is conspicuously silent about Disabled students receiving electric shocks in a “school” in Massachusetts. It is called treatment and it has the support of some parents. But this does not make it less dehumanizing and less than a torture. There is an outcry when animals receive shocks but our lives are seen as less valuable, so the media remains silent.

From infantilization and desexualization of developmentally Disabled adults, to the mocking of wheelchair users who dare to not be completely immobile, and have the audacity to buy an alcoholic beverage – as adults do – to how the media refer to us, our voices, our opinions, don’t count.

It is devastating, and truly scary, to read the news of yet another Disabled person being murdered by a family member or caregiver. Devastating, because the only reason for the murders is due to the victims disability.

Scary because the media immediately finds excuses for such horrible crimes, and the victims are blamed for their own murders.

The articles and reports begin by painting the murderer as a “dedicated, desperate and heroic” caregiver who could no longer live with a “difficult and violent, incapable of love, severely” Disabled person.

Not only the victim is blamed, there is also the false and absurd correlation between the crime and lack of services. The victims are blamed, lack of services are said to be the cause for the crime (like ransom for our right to live), while the murderers get the sympathy and understanding. Even in the rare occasion when the media remembers that we do have thoughts and feelings, our words get buried by the extreme compassion everyone is supposed to be feeling for the perpetrator.

In some cases, the media decides to show its support for the murderers with long interviews, when they are allowed to paint their victims as evil beings, destitute of feelings. By the end of the interviews, the perpetrator is given a sympathetic “all the best to you, I hope you don’t stay in prison for too long” speech. The only mentions – and images – of the victims are the ones that violate their dignity and show them in vulnerable moments.

The media does not care enough about us to follow up on filicide cases but when it does, the message is that our lives are unimportant and without value. Disabled children are being “allowed to die” in hospitals, the courts granting parents the right to withhold food and fluids to children who are in pain. More than a few times we do not receive the same pain management care non-disabled people would because our lives are seen as not worth living. This is frightening close to the origins of the euthanasia program Aktion T4, in 1938 Germany.

Then there is another fact that cannot be forgotten: when a mass murder happens, the first comment – or assertion – in the media is that the crime is so outrageous, only a person who is “lonely”, “withdrawn”  – code words for Autistic – could commit.

Never mind facts and statistical research proving the opposite. The “possible” disability of the murderer is still the headline.

When disabilities are portrayed in the media, it is usually to blame Disabled people for murders – even our own.

The motto of the disabilities rights movement is “Nothing About Us, Without Us”. After 25 years, we still fight for access, equality and opportunity.

We still need to remind non-disabled people, and the media, of our humanity.


"We Cannot Stop" by Amy SequenziaAbout the Author, Amy Sequenzia.