By Jason DaSilva
Mr. DaSilva is a filmmaker with multiple sclerosis.
Opinions
The New York Times
In February 2013, I
received the greatest gift of my life, the birth of my son. Over the next three
years, I watched him grow into a clever, energetic and humorous little boy. He
embodies the best qualities of his mother and his father, in all the ways a
parent dreams. And even though I have primary progressive multiple
sclerosis, the condition didn’t hinder my ability to be a father to him.
His mother and I provided a loving and supportive environment.
Then his mother and I
separated. She and my son moved to Austin, Tex., while I remained in New York
City. I was determined to move there too, to co-parent our son. So I went to
Texas to investigate what life for a Medicaid-dependent person with
disabilities would be like there. I quickly found the quality of health care in
Texas did not come close to what I receive in New York.
I next looked at
surrounding states to see if they had adequate Medicaid coverage. I discovered
that funding for Medicaid varies widely by state, creating huge hurdles for
sick and disabled people like myself who need to move to another state,
especially those of us who need in-home round-the-clock care.
The disparity amounts
to institutionalized discrimination against aging and disabled people, and it
prevents me from truly having a choice about where I can live.
If I were to move to a
nursing home, where the best level of 24-hour care in Texas is available, I
would have to give up my personal aide; aides in nursing homes are expected to
help multiple people simultaneously. The most basic tasks of life — showering,
shaving, food preparation, eating, going to the bathroom, checking emails,
answering phone calls — would be significantly more difficult, diminishing my
independence as a father, personal well-being, health and even my life
expectancy. In New York, because of the one-on-one care I receive, I am able to
keep up with my career as a filmmaker and activist.
Life has presented me
with these challenges because I’m strong enough to endure them, grow from them,
and help others dealing with them, too. Regardless of my disability, each day I
strive to spread awareness of the damaging discrimination against the disabled
population of the United States. Despite these challenges, I remember what’s
most important: my son. If having a physical disability has infringed on my right
and ability to be a parent to him, I fear that other disabled people may lose
their right to be a parent too, to get the care they need while being with the
families they love.
Jason DaSilva is an
Emmy award-winning filmmaker and activist whose previous Op-Doc is “The
Long Wait.” This film is part of a series by independent filmmakers
supported by Firelight Media.
Op-Docs is a forum for short, opinionated
documentaries, produced with creative latitude by independent filmmakers and
artists. Learn
more about Op-Docs and how
to submit to the series.
In support of Multiple
Sclerosis research:
Twitter hashtags:
#BikeMS #brain #CureMS #demyelination
#disease #FightMS #FuckMS #FuckYouMS #FUMS
#lesion #MovingMountainsForMS #MS #MSawareness #MSAwarenessMonth
#MSeducation #MultipleSclerosis #MSstrong
#MSSucks #MSwarrior #myelin #mymsme #OMS #stumblingprincess
#ThisIsMS #vertigo #WalkMS #WalkTogether #WeAreStrongerThanMS
#WorldMSDay
NEVER GIVE UP!
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