by: Ethan B. Ellis
I received the email below from a leader of a parent advocacy network for people with developmental disabilities on waiting lists in almost every state. I reprint it here along with my response because it suggests the beginning of a change from go-it-alone thinking to the need for a broader coalition.
Why We Are the Have-Nots
There is massive inequality is the DD service system in America. 300,000 to 600,000 people with a developmental disability are on Medicaid Waiver waiting lists and there is no end in sight to eliminate these lists. People with a developmental disability are a microcosm of the inequality in the American economic system. For example, in Florida 40 % of the eligible people with a DD are on our waiting lists have been waiting since 2003. Yet our plight is met with yawns and indifference by politician, families getting services and the service providers/advocates. .
While engaged in the fight to eliminate the waiting lists, I have wondered why so many Americans do not give a rat’s butt about the least amongst us on the waiting lists. Florida’s APD director calls those of us on the waiting list the “unlucky ones” because we did not get into the service system in time. However it is that and much more.
Neither the lucky ones (families getting services) nor their multibillion billion dollar a year service system care enough about people on the waiting lists to do anything meaningful to help. The big question is why?
I have come to believe they do not consider us worthy of their effort. In fact, they are OK with a system that is inequitable as long as they are not ones on the waiting lists. More than that, Americans in general are OK with inequalities in our economic system even to the point in which they are suffering while the select few are thriving.
Families on the Medicaid Waiver waiting lists are the have-nots and we have many who are becoming the “dreamless dead”. The following article explains this concept in much greater detail. It helps explain why those few of us fighting to eliminate the waiting lists are swimming upstream in our quest to eliminate the Medicaid Waiting lists.
(The email ends by quoting a lengthy Reuters Special Report: The haves the have-nots and the dreamless dead which summarizes media reporting on income inequality and is well worth reading.)
Mike Coonan
Here’s my response.
I’ve been blogging about the positive correlation between income inequality and a host of social ills, most of which affect people with disabilities for a couple of years. Overwhelming evidence for this correlation is summarized in The Spirit Level by Wilkinson, R. & Pickett, K, 2009.
They demonstrate that problems like wait lists are not strictly disability issues; they are due to the inequality resulting from this country’s political-economic structure and won’t be solved until that structure is reformed so that the country’s wealth is no longer concentrated in the hands of the richest 10% who now own 50% of it, while the other 90% of us fight over the other half. This trend, due primarily to the actions of the best governments money can buy, has accelerated over the last three decades, the same period during which public services, including those for people with disabilities, have declined.
To reverse that trend, we must build a social movement among all who are hurt by it. Until recently, people in the middle-class (earning between $50,000 and $150,000) believed that the trend only affected poor people, if they were aware of the trend at all. Since poor people have no voice in public affairs, their plight has gone unheeded, including those with disabilities, 80% of whom are poor.
Recently, however, the trend has accelerated so much that it now affects people in the middle-class, who can no longer ignore it. Between 2007 and 2009, the last figures available, the real income of the average middle-class family declined by over $2,000 while the income of the richest Americans increased by $500,000.
Middle-class families of people with developmental disabilities, who historically have been the most successful in lobbying for services for their children, have not seen fit to join with others to expand those successes to include all people with disabilities, let alone those who are poor because they are people of color, women or members of other devalued groups.
And they are paying for it. As the head of the association of California Regional Centers told me recently, now that the state is no longer honoring the Lanterman Act and is cutting the center budgets by as much as 10% for starters, he is getting little sympathy from other disability groups who have not been so generously funded.
Regardless of past history, that should not be.
The bottom line is that all people in need will continue to wait until they and those who support them join all of us who are devalued in a social movement strong and united enough to successfully demand that the gap between rich and poor be narrowed and that the resulting resources be distributed equitably among all who need them.
We must begin by uniting the disability community around the needs of all of us and then build coalitions with the many groups whose needs may look quite different but which have their roots in the same income inequality that makes have-nots of all of us.
Gonextstep's Blog 
I’m very confused about others thinking that they are entitled to the wealth of others. When I grew up I came from a low income family who in turn came from even poorer families and lived when their was no such things as entitlements. I learned that through sacrifice, through working hard (maybe two or three jobs), and depending on oneself that you earned your way in life. You earned self respect.
Through past generations of my families hard work and sacrifice their decedents are finally starting to see the fruits of their labor. Based on the previous blogs people think that they are entitled to take all of that away because they think they are entitled to it.
The American dream is to work hard and earn your right to a better life. Not to steal and demand that life from others no matter what cards you were delt.
I don’t want my child learning that they have to take away from others to be happy. That others through their hard work should support him. I want him to learn independence and to work harder than anyone else. Just as I did in a male dominated field. I didn’t want to be promoted just because of my gender but because I worked hard to get where I was and I earned my position.
If taking from others is what the disability movement is about you just lost an advocate. It’s not equality you want but a handout.
First, let me congratulate you on your success and the hard work of your family that helped make it possible. Mine is no stranger to hard work, either. Grandpa Breckenridge began working as a tenant farmer and died in his sleep after planting a quarter acre of truck garden, sliding along the ground on a pillow – he couldn’t stand because of arthritis. By then, he owned an 80-acre farm, which he still cultivated with a horse because tractors cost too much.
His daughter, my mother. paid her way through college as a live-in maid. Though I was born with cerebral palsy, i began work at 12 delivering papers for a penny apiece and worked at a bankers’ convention and 2 different libraries before i finished college where I supplemented my scholarship by sweeping the dining hall floors.
I could claim we did it all by ourselves…but we didn’t. Somebody paid the taxes for the public schools we all went to. The feds brought electricity to the farm after the war (WW II, to you). Somebody donated the scholarship funds Mother, Dad and I earned to get through college and graduate school. Hundreds of people share responsibility for our success and hundreds of millions have contributed to it with their tax dollars.
Today, Grandpa couldn’t make a living on his 75 year-old gimpy legs. The world has become too complex, work is more specialized and all of us are more interdependent. When it hasn’t been bought out by the highest bidder, government is us filling in the gaps for each other caused by that complexity.
So how do we decide who’s entitled to what? Is Bill Gates entitled to dump his fair share of the federal highway system off on me just because he can afford a tax lawyer who finds a way for him to pay a smaller percentage of his income to the Feds than I do? Is my hedge-fund manager nephew entitled to buy a 300-acre farm in Connecticut for fun and and 88,000-acre one in Brazil for an investment just because the lobbyists he helps pay for got his income taxed at 15% while I pay 27% on mine?
Nobody is talking about taking away all that your past generations have taken away from you..or at least, I’m not.
I’m talking about – and working to build – a fairer world in which EVERYONE is entitled to safe, nutritious food, an adequate home, good, affordable health care, all the education they can benefit from and a job that provides them and their family a decent standard of living if they can work and income support if they can’t.
Those are basic human rights. If our ancestors were denied them, shame on the cruelty of the people who were running the world then. Today, in the richest country in the world, we can afford those rights for everyone without depriving you or me of our inheritance, which we did nothing to earn except pick our families well.