Please Do not Forget Us!

Dear President-Elect Obama,

I am writing you as a supporter, both in promoting your candidacy with words and financially, and as a member of a small, silent minority in this country the severely disabled from disease or injury which has made us wheelchair bound, dependent on others, sometimes ventilator dependent and confined to our homes or facilities. I recognize during this time of transition you have many critical and defining issues to plan for and deal with but; please do not leave this long forgotten minority that knows no bounds of race, religion, creed, age, sexuality etc., out of the change we so much desire.

Those of us afflicted did not seek nor do we desire to be wards of the system. We merely pray for assistance to achieve as normal a life as possible, that the government not add to our burden and that those who choose to help care for our needs that they not be punished for making this choice of ultimate love but rather receive as much support as possible. Those of us who are disabled mainly have one wish to have meaningful lives in which we contribute to the greater good of society. You will find no group with a bigger desire to answer your call of service to country and with today’s technology, there’s no reason we can’t do it. We only need the chance which you have the power to provide!

I do not presume to fully represent all those coping with severe disability nor do I believe my circumstances are any where close to the most difficult stories of others with severe physical disabilities. However, I will use my now 15 year journey with ALS, Lou Gehrig’s Disease, to outline some of the essential needs or barriers we face that have been long ignored. The most fundamental of these is the fact that we are treated as living ghosts in our society. This primarily is a result of society’s singular focus on physical attributes. There can be no starker example of this than when I was diagnosed as a single man at age 27 and told to go home and plan my funeral because my life was over. As now a married, father of three daughters at age 42 I rejected this thinking which is why I am currently a graduate student in the University of Michigan-Dearborn’s online program. The problem here is the archaic rules of Social Security and Medicare which keep us dependent on and virtual prisoners of these systems. This is a near insurmountable mountain keeping us from working and a more normal life which we desire. A second and related point is we just want a CHANCE to prove what we’re capable of contributing to society. When I was seeking assistance from Vocational Rehabilitation (the agency setup to assist those who are disabled to get back to work) to further my educational goals and professional goals to become a professor, I was actually told “your goals are too lofty, but we will help you become a bookkeeper . . . We do not believe you can achieve your goals.” Really in America where anything is supposed to be possible, is the position of a governmental agency to squash aspirations, another barrier.

In your campaign, when speaking of health care issues you alluded to the reality that many bankruptcies are the result of medical issues. Within the disability community, we account for most of those bankruptcies due to a perfect storm of government rules whose programs we’re forced into and insurance companies who hurl as many barriers at us as possible until they can find any excuse to eliminate their obligations to us. I can write pages on this issue, but I will focus on a situation that occurred me just last year. My long-term disability benefits were suddenly halted after 13 years because they decided they had overpaid me because they had not subtracted my daughter’s Social Security benefits meant to assist with their care. Had I chosen to have no children my disability payments would have been unaffected. Their position is to dollar for dollar reduce their obligation essentially taking Social Security benefits meant to assist disabled parents care for their children. This unjust loophole secretly utilized by insurance companies to shirk their obligations must be closed immediately.

Finally, the most significant point is the lack of recognition and even punishment of loving caregivers everywhere Even though caregivers at the very least are keeping us at home and saving the government the excessively high cost of nursing home care, they receive little if any compensation or even physical relief. Even worse they are often financially punished for their amazing choice to stand by us. In my wife’s case, she has seen a student loan grow from around $20,000 to over $70,000 because she has been unable to work on account of caring for me. She can’t even get rid of or reduce this debt if she goes through bankruptcy. This albatross of debt around her neck is outrageous especially when you consider that she has conservatively saved the system over a million dollars in nursing home costs.

Those of us dealing with severe disabilities don’t want a hand out but just a hand shedding the barriers to as normal a life as possible. We hope to be a part of the movement of change that you are leading to do our part to make this a better country. Please don’t lose sight of our nearly silent minority and allow us change our destiny along with that of our country. Be well and happy!

Sincerely,
Jeff Lester
Lebanon, Missouri

It's Time!!!

Originally written July 22, 2007 on my forum.

Today I woke up and as usual I had to be moved via hoyer lift to my Lazyboy to get cleaned by my wife, be fed by my wife and finally have the computer rolled in front of me so I could at last begin the only independent activity left in my life, working on my computer with the key to this independence a HeadMouse. Today was the same as any other day especially the last 10 years since being diagnosed with ALS where each day blends into the next with the only things breaking the monotonous pattern being the occasional outing, visitor, holiday or my favorite a hospital visit but I felt something different as I began to feel a boiling in my gut. No it wasn't last night's meal or the summer heat getting to me, it was anger. It kept building to the point where I wanted to scream ENOUGH!!! Then it came to me, "It's time!" It's time to stop being nice and DEMAND that ALS and diseases like it cease to exist. It's time for us to be treated just as humanely as the prisoners at Guantanamo Bay. It's time to stop the legal holocaust against our families that allows us and our families to be stripped financially even when we have done everything correctly and it causes some PALS to choose death instead of fighting to just save their family's finances. IT'S TIME to DEMAND much more than the few pennies we're given to find a cure but instead get the billions put toward erectile dysfunction, hair loss, fat reduction, unjustified wars, bridges to nowhere, melting ice and all the other wasted money on trivial things to SAVE OUR LIVES!! Finally, IT'S TIME for us to stand up (figuratively for most of us) and in one voice yell, "We're MAD AS HELL AND WE'RE NOT GOING TO TAKE IT ANYMORE!!!"