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.