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

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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.

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

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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!

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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: http://www.youthpowerny.org
You can also get involved with NYSILC’s Youth Leadership Subcommittee: http://nysilc.org/youth_leadership.htm

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: http://www.facebook.com/CoalitionforMultiplePathwaystoaDiploma
http://www.advocatesforchildren.org/policy_and_initiatives/pathways_to_a_diploma

“To Autism Speaks” By Marc Rosen

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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) http://www.lulu.com/shop/james-p-wagner-and-marc-rosen/perspectives/paperback/product-12430935.html and Monster of Fifty-Nine Moons and Other Poems ( (Marc Rosen, published by Local Gems Poetry Press, 2012) http://www.lulu.com/us/en/shop/marc-rosen/monster-of-fifty-nine-moons-and-other-poems/paperback/product-18901015.html

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

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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

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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.