Neil Taylor

Imagine one day you are a 28 year old math and PE teacher at a boarding school for middle-school-aged boys with learning differences, totally in love with your job.  You're a high level athlete, played E1 lacrosse while in college at the University of Vermont, and enjoy back country skiing.  You're a fully-sighted young man with everything going for you.

Now imagine one week later you wake up from emergency surgery for a cancerous brain tumor, incredibly fortunate to be alive, but in a world of complete darkness.  The fluctuation of pressure on your optic nerve during surgery by this previously undetected brain tumor has destroyed the nerve, leaving you totally and permanently blind, lacking even light recognition.

If you can imagine this, then you can imagine the world of Neil Taylor of Putney, Vermont in 2008.

Yet the rest of the story may not be what you might imagine, for Neil and his story are an incredible example of what is possible - in life and work - with the kind of attitude, persistence, work ethic and openness to opportunities that Neil possesses.

Patrick Standen

     As April Tuck mentioned in her greeting above, our October 26th half-day symposium, "The Art of Possibility - Living and Working with a Disability" was kicked off by an inspiring keynote address given by Saint Michael's College Instructor of Philosophy, Patrick Standen. Patrick is also the co-founder and president of the Northeast Disabled Athletic Association; having sustained a spinal cord injury and paralysis from an automobile accident at age 16, Patrick uses a wheelchair.  

      Patrick's presentation was entitled "Employing Disability".  In this compelling presentation, he wove academic concepts together with his personal experience to illustrate various aspects of disability, providing a deep insight into the historical response to disability and how that has influenced current practices in life and in the work world.    

Click here to read more!   

Last summer we solicited nominations for the 2011 Governor's Awards.  Unfortunately, due to the aftereffects of Tropical Storm Irene, the September event which was the venue for handing out the awards was postponed.

Happily, the event - and the awards ceremony - have now been rescheduled for June 4th.  We will consider all nominations submitted last summer AND we welcome the opportunity to consider additional noteworthy activities which may have taken place since our original nomination deadline of August 26, 2011.

As a reminder,  the Governor's Awards were initiated in 1989 and are presented

In 2008 Neil was teaching at the Greenwood School in Putney, where he also served as a dorm parent and surrogate father to the students.  He mentioned in passing to his girlfriend at the time that he was experiencing some random and fleeting episodes of tunnel vision.  Her insistence that he see a doctor saved his life, for in reality he had a tumor the size of an orange taking up his entire left hemisphere.  Plans for a craniotomy to remove 90% of the tumor - with Neil awake during surgery to help guide the tumor's removal - were scrapped when Neil suffered massive seizures.  Instead, he had emergency surgery and 70% of the tumor was removed.  Had his girlfriend not insisted that he see a doctor, Neil surely would have had these seizures alone in his room in the middle of the night and died.

Neil Taylor

Yet he also had a very strong support system in his family and he was able to move back into his family's home after he had to quit his job.  Furthermore, while athletics were now seemingly off limits to Neil, he still possessed the attitude, perseverance, and work ethic of an athlete.  So, when presented with various opportunities by Mike Goldberg of the Vermont Division for the Blind and Visually Impaired (www.dbvi.vermont.gov) for relearning life and work skills, he applied these traits and began the hard work of rebuilding his life. 

A number of services were made available to Neil: 1) funding to purchase adaptive computer equipment that is voice activated, as well as a reader that allows him to read a large quantity of books (a practice that brings him great pride); 2) access to classes to explore the field of massage therapy; and 3) admission to The Carroll Center for the Blind in Newton, Massachusetts to learn life skills.  (http://carroll.org)

Neil spent four months at The Carroll Center learning how to cook, go food shopping, clean his apartment, pay bills, and organize - all the life skills he needed to live independently.  After his graduation from the program, he celebrated a major accomplishment when he moved into his own apartment in downtown Brattleboro.  Now - thanks to orientation and mobility training he received from the Vermont Association for the Blind and Visually Impaired (www.vabvi.org) - Neil is able to walk to everything, which he loves.  In addition, he has built a daily fitness routine into his life, working out in his apartment using an elliptical runner.  He also enjoys lifting weights with his father.

His life skills training well in hand, another possibility soon presented itself to Neil to reintegrate sports into his life.  Through a friend he learned about First Descents (http://firstdescents.org), which "offers young adult (ages 18 - 39) cancer fighters and survivors a free outdoor adventure experience designed to enable them to climb, paddle (kayak) and surf . . . and reclaim their lives."  Neil spent a week at a kayaking camp in Colorado, running the rapids in his own one-man kayak by following the bell of his leader, camp founder Brad Ludden.  Despite his blindness, this was possible because kayaking is a sensual sport involving a lot of feel.  He realized that his life wasn't over, that he could still do things, have fun, and be adventurous.

Neil Taylor kayaking with Brad Ludden

Energized by his First Descents experience, and building on his preliminary class work, Neil turned his attention to the possibilities for establishing a new career.  He pursued training at the Pyramid Holistic Wellness Center in Rutland, Vermont and earned his certificate in Holistic Massage Therapy.  A requirement of his training was to garner many hours of practical experience doing massage, and in a happy confluence of life circumstances, Neil arranged to do all of these hours with First Descents, giving clients massages after their physical activities.  He spent four months during the summer of 2011 in Utah, Colorado, Oregon, and Montana doing massages for First Descents participants.  In Neil's words, it was the opportunity of a lifetime, a dream come true.  He did massages for four hours a day and then he himself could go kayaking and rock climbing if he wanted to.  By gratefully embracing the First Descents opportunity, Neil was able to fill the void he felt in the physical realm.

Fast forward a few months to December 2011.  Neil has just been hired as a professional massage therapist by Jasmine Massage, which is located not only in Brattleboro, but in the building where Neil lives.  He is now working on building a client load that allows him to work full time (30 hours per week).

In the space of under four years Neil has rebuilt his life and career - an accomplishment all that more remarkable given that he experiences total blindness.  Most individuals with visual disabilities have some vision,

Neil Taylor on the water

whereas Neil has none.  He uses a cane to get around and in new environments he will - as he says - bounce around like a pin ball.  This is necessary, of course, to learn about his environs.  Which is not to say that it is easy; Neil will tell you that it isn't.  It's also challenging socially being the only blind person his age in Brattleboro.

Coping with these challenges isn't always easy and there can be loneliness.  Some friends haven't always known how to respond to his vision loss, yet as Neil says, he is still the same person they knew and laughed with.  People sometimes misunderstand his blindness and think of him as a shell of the person he once was.

Yet if there is anything this story shows it is that Neil is one heck of a guy.  He is happy and grateful to be alive and is enjoying his friends, his new life, and his new career.

Imagine that.

Kicking off his presentation, Patrick expressed that today we are still 

Patrick Standen

challenged to

overcome 1,000 years of prejudice and vilification towards people with disabilities.  For, as he noted, historical opinions that aren't critically questioned and  are left unchecked in the moment become the background assumptions that lead to prejudice.

The following are some of the key background points he made in his compelling and well-received presentation. 

-  In the Bible, Leviticus states that no disabled man can offer food to a priest.  Such Biblical injunctions start the process of stigmatization.

-  Disability has long been viewed as an immutable condition caused by supernatural agency.  From the Spartan practice of eugenics known as "exposure" to today's PAPP-A tests to screen for the potential of Downs Syndrome, societies have long sought to punish or remove the disabled from society.

-  Disability doesn't just affect the individual with the disability, but it costs society, and so the individual should be discarded.

-  In literature and the arts, a person with an external "deformity" is often presented as a person with an inner flaw, employed to point to some sort of psychological disability.  Examples include Captains Ahab and Hook.  By internalizing their difficulty in viewing their disability, such characters are often either compelled to save the world (Jake Sully in the movie "Avatar") or are quite dissolute (Jake Barnes in Ernest Hemingway's "The Sun Also Rises"). 

In addition to pointing out the historical roots for current cultural practices and attitudes regarding disability, Patrick shared some eye opening statistics.  Using the medical model of disability, 1 in 8 Americans, or 51 million individuals between 18 and 64, have some kind of physical impairment.  People with disabilities constitute the single largest minority group in the United States, cutting across the lines of race, religion, ethnicity, and socio-economic class.  Most people with a disability are under- or unemployed.

According to the National Organization on Disability, three times as many people with a disability live in poverty.  Twenty-six percent earn less than $15,000 per year.  Twenty-two percent report having experienced some form of job discrimination.  Only thirty-five percent are employed full time, making them a very large, untapped workforce.  People with disabilities are twice as likely to drop out of school and to have inadequate transportation, and most lack health insurance.

Patrick shared that in order to shift to healthier employment practices and help individuals with a disability to find employment, we must overcome our imbedded prejudices.  One way to do this is to look at how we define and speak of disability - the words and the "model" we use.  For, as Patrick explained, how we use words can change things.

There are three different models regarding disability:  the medical model; the person-centered model; and the social constructionist model.  Each of these offers a slightly different way of talking about disability.

The medical model focuses on impairment or the loss of a specific behavior or major life activity.  Here disability is seen as a "loss", as "impairment".  In this model, the doctor has a duty to cure and return one to "normal function". 

Patrick shared the practical implications of this model in his own life.  While grateful to have a doctor striving to heal his injuries, his experience has been that doctors will often look away from him, seeing him as a "wheeling insult to their inability to fix him".  Nurses, however, usually act differently because their training model is based on providing care as opposed to returning one to full function.  Physical therapists, in Patrick's experience, are the most enlightened as they have a much more intimate sense of disability and ability and look at it along a gradient.

Aristotle on pity

Continuing on, Patrick expressed that while we want our physician to

be focused on achieving a cure, this focus can also lead to a tragedy or pity model, where one feels sorry for you for losing function.  Patrick expressed that while pity is good  and important as the basis of empathy, it can also be misplaced, as well expressed in this profound quote from Aristotle:

"We pity in others, what we fear in ourselves."

Patrick pointed out that it's not so much that we feel sorry for the person with the disability but rather we feel sorry for ourselves because we feel fear.

The second model is the person-centered model, which focuses first on the person and then their condition.  These guidelines from the American Psychological Association for person-centered terminology are followed in the workplace and medical realms.  For example, one would say "the boy with Downs' Syndrome" or "a man with paralysis" (instead of "a paraplegic").  Such language affirms a person's dignity and respects their autonomy.  Patrick pointed out that people will often complain about this focus on being "politically correct", and while it is true that person-centered language calls upon us to change our speaking habits, in the process it also empowers and creates a new reality that counters the prejudices of other ill-chosen words and their histories. 

Speaking of history, Patrick then shared the history of the word "handicapped", which comes from old English tradition.  Beggars who were disabled by war would ask for alms with their cap in their hands; over time the connotation has become that a person with a disability is a beggar.  However, as Patrick said, by challenging ourselves to think differently and use new language, we allow new worlds and possibilities to open up that allow a person with a disability to flourish on their own terms.

Finally, there is the social-constructionist model, which holds that disability is defined not by the attributes had by an individual but rather by conditions created by our social environment.  This model looks at individuals with physical, developmental or intellectual disabilities as people first and resists defining them by their attributes.  It understands that one person's disability may be another person's ability.  For example, a peer counselor in a rehabilitation hospital who has a disability may have an advantage in her work over her non-disabled colleagues. 

As he began to wrap up his presentation, Patrick posed these questions:  Why should we care (about hiring a person with a disability)?  Why should we try to make the world a better place?  How does this affect me?"

Here is his response to such questions.  First of all, he feels it is the professional and moral duty of employers to hire a person with a disability.  In addition, however, it is also in the self-interest of each of us.  

In the disability rights community a person without a disability is often referred to as a "TAB", or "temporarily able bodied" person, because disability happens.  It happens to everyone.  You may not have a physical or perception disability now but you will - perhaps not to an alarming level but this is a reality of aging and of living in an industrial society.  According to the insurance industry, people under 35 have a 1 in 3 chance of becoming disabled; by age 42 that rises to 40% chance.

We acquire disability in a variety of ways - at birth, through a catastrophic accident, due to a genetic load that expresses itself later on, and through general aging.  Therefore, it's in each of our best interest to make the world a better place, because after we become disabled, each of us will still want to get up, go to work, go out, pay our bills, and integrate fully with society. 

Suj Desai

Finally, in conclusion, Patrick shared the example of 27 year old Sujeet Desai, who is a concert pianist, 2nd degree Tae Kwon Do black belt, graduated with honors and a 4.3 gpa from his high school, and built his own website.  He also, by the way, was born with Downs Syndrome.  In looking at him, Patrick said, some might jump to the conclusion that he is "disabled" - but that word and his condition are irrelevant to what he has achieved in life.  With that example in mind, Patrick gave these marching orders:    

 "Disability isn't relevant.  If a person is otherwise qualified, you should give them a chance and opportunity.  You might see that it benefits your business and is an all-around boon for society"

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So, reflecting on Patrick's presentation, we invite you to consider:  Do you hire individuals with disabilities in your organization?  Do you use terminology related to disability in a positive, person centered way?  How do YOU "employ" disability?