Reading the
NewYork Times article, “Becoming Disabled,” stirred some emotions. I felt the
writer, Rosemarie Garland-Thomson, did a fine job of crossing the boundaries of
what it means to be disabled as well as what is a disability. So many of us
living with a disability, like a progressive motor neuron disease, have had to
face the realization, often far too soon in life, that we are now different. Initially,
we find it to be a lonely world out there. Fortunately, with the right support,
we emerge from the tunnel and discover there is life after disability.
Below is an excerpt from the Times article. I hope you enjoy it.
Roughly
one in five Americans lives with a
disability. So where is our pride movement?
“… The fact is, most of us will move in and out of
disability in our lifetimes, whether we do so through illness, an injury or
merely the process of aging.
The World Health Organization defines disability as an
umbrella term that encompasses impairments, activity limitations and
participation restrictions that reflect the complex interaction between
“features of a person’s body and features of the society in which he or she
lives.” The Americans with Disabilities Act tells us that disability is “a
physical or mental impairment that substantially limits one or more major life
activities.”
Obviously, this category is broad and constantly shifting,
so exact statistics are hard to come by, but the data from our most reliable
sources is surprising. The Centers for Disease Control and Prevention estimates
that one in five adults in the United States is living with a disability. The
National Organization on Disability says there are 56 million disabled people.
Indeed, people with disabilities are the largest minority group in the United
States, and as new disability categories such as neurodiversity, psychiatric
disabilities, disabilities of aging and learning disabilities emerge and grow,
so does that percentage.”
“… Still, most Americans don’t know how to be disabled. Few
of us can imagine living with a disability or using the technologies that
disabled people often need. Since most of us are not born into disability but
enter into it as we travel through life, we don’t get acculturated the way most
of us do in our race or gender. Yet disability, like any challenge or
limitation, is fundamental to being human — a part of every life. Clearly, the
border between “us” and “them” is fragile. We just might be better off
preparing for disability than fleeing from it.”
“… Becoming disabled demands learning how to live
effectively as a person with disabilities, not just living as a disabled person
trying to become nondisabled. It also demands the awareness and cooperation of
others who don’t experience these challenges. Becoming disabled means moving
from isolation to community, from ignorance to knowledge about who we are, from
exclusion to access, and from shame to pride.”
urging
Congress to stop the Center for Medicare and Medicaid Services (CMS)
from applying competitive bidding pricing to complex rehab wheelchair
accessories. CRT and related companion parts or accessories are needed
by many people living with muscular dystrophy, ALS, spinal muscular
atrophy (SMA) and related neuromuscular diseases to live healthy and
independent lives. The collective efforts were successful in securing a
one-year delay prohibiting CMS from applying the cuts to power
wheelchairs through December 31, 2016.
With that date fast approaching, we need your help again. Take action
below to let your members of Congress know that access to CRT is
critical, and urge them to support and bring H.R. 3229/S. 2196 to a vote.
