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Dream a Different Dream

September 24, 2009

 This post was contributed by Dr. Johnette Hartnett, Director of Strategic Partnership Development and Research for The National Disability Institute and Director of The Real Economic Impact Tour.

I only wish my parents were here today so I could formally apologize to them for not really understanding their lives and what they must have lived through. Both were born in the early 1920’s, prior to any civil rights, education and employment legislation for persons with disabilities. Both had disabilities.

Mom, a nurse who raised four children, contracted polio in her teens. Dad, a biochemist and college professor of 50 years, suffered cerebral palsy (CP). 

Admittedly, as both a child and an adult I never heard my father’s slurred words or saw his uneven gait – I only recognized him as Dad — even when people pointed out to me his differences (“What’s wrong with them? Has he had a stroke? Is he drunk?”). Instead (perhaps as a defense mechanism against such insensitive questions), I would proudly boast that not only did Dad have CP but he was also an accomplished Ph.D in biochemistry who’s early work on cancer contributed to the identification of a new pancreatic enzyme.

Even today, when a colleague with a disability pulls me aside, asking, “What was it like to have parents with a disability?” it’s hard for me to think of my parents as “different.” But they were — in ways I didn’t know and have since only begun to understand.

In particular, I remember discovering Dad’s checkbook system after he died — a complicated jumble of numbers more complicated than the chemical tables he could list backwards. Considering that no financial education or money management was ever mentioned in our family, let alone any mention of disability or what it cost for my parents to navigate their lives in a world that basically ignored disability, perhaps this shouldn’t have come as a surprise; the resulting struggle in Dad’s last years to pay out of pocket for a staggering $72k/yr nursing home bill (in lieu of long-term care insurance) was difficult, to say the least.

Today’s generation is luckier, thanks in part to the Real Economic Impact Tour; since 2005, the REI Tour has provided free tax assistance to over 330k taxpayers with disabilities, saving them an estimated $66M in paid preparation fees. Very real economic impact. 

And while this is just the beginning, our dream is to someday redesign the entire financial and tax system, so that regardless of one’s ability, access to financial information and services is easy; one less difference between us.

The 2010 Real Economic Impact Tour kicks off October 21.  We hope you’ll join us in helping you make your dream real.

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6 Comments leave one →
  1. Elizabeth permalink
    September 28, 2009 3:36 pm

    A wonderful and very moving blog, Johnette. Hearing your parents story was inspirational to this differently-abled reader.

  2. September 30, 2009 5:39 pm

    In this blog, Johnette Hartnett moved me to tears with her poignant story of her parents’ disabilities and methods of coping without help many years before anyone had heard of the ADA. How her father struggled with symptoms of Cerebral Palsy, including his stay in a staggeringly-priced nursing home. How much we with disabilities take for granted today: such as services like REI Tour free tax preparation. (I could spend up to $200-$300 of my scant resources at an accountant’s office without this kind of help.) Many thanks for being a pioneer, Johnette.

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