Monday, January 12, 2015

Disability and Poverty...the American Way...

According to recent statistics 1 in 4, or 28% of those aged 18-64 years of age living with a disability live below the poverty rate.  I am one of those myself.  The poverty rate in the United States is considered any individual earning under $11,139 per year, which basically describes all of the disabled in the united states living on SSD and SSDI.  Those of us considered disabled are not allowed to earn over $700 a month in order to receive SSDI, cannot ever save over $2000 in savings, in short,  everyone with a disability in the United States who receives SSI is legally obliged to be poor.

Even as today, there is a new law passed that allows parents of disabled children under 18 to put roughly over $100 thousand into a savings plan, this money can only ever be used for medical expenses and disability related expenses.  

This income disparity between the abled and other-abled/dis-abled can hardly be what the founding fathers of this country had in mind.  A lower socio-economic status is linked directly to lower education, poverty and poor health, ultimately affect our society as a whole. Inequities in wealth distribution, resource distribution and quality of life are increasing in the United States exponentially.

Specifically, I am thinking about all the many children who becoming adolescent age out of the "system", those with developmental disabilities such as ACC and ASD.  Many of us end up homeless, hospitalized, on the fringes of society, even in prisons that are largely being used as "storehouses" for the intellectually and developmentally disabled populations of this "great" county of ours.

I question, where is the opportunity so often spoken of as available in our country to lift one's self up and succeed?  I would argue it largely does not exist for us.

I myself grew up in an upper middle class family.  Both parents worked (hard), and I never lacked for anything (monetarily or physically) in my years of maturation.  Yet, in a family that was sorely prepared or willing to deal with my disability for the first, say, 20 year of my adolescence  I did the equivalent of couch hopping in order to survive, depending on the kindness of friends and strangers, till they themselves no longer could cope with my (as yet) undiagnosed disabilities.

I left home young, then came back home, ultimately by 26 I was shunned by my family, told to be "family at a distance" and then completely estranged from them.  I can honestly say, that since then, till the present time at age 52 I have lived well below the poverty line.

Prior to diagnoses I tried to work.  After all, my father would constantly pound in my head his good ol' "Judeo-Christian 'work ethic' " of "just try harder, you have to work harder and that is the solution to all your problems."  By the time I was put on SSDI I had many dozens of job attempts, so was it really that I was not "trying hard enough"?  I say not.  I have never kept a full time job at all, not for more than a couple of weeks anyhow, and the longest I ever kept a part time job was 6 months, but this wasn't for lack of trying.  It is because of my disability.

Prior to diagnoses of ACC I had no way of understanding why I could not navigate complex social situations.  I also had no concept as to why the organization and management of my life (let alone "work") was nearly impossible for me.  Those with ACC can often have great difficulty with executive function.  We can, in a controlled environment test very highly in our abilities, but given the task to perform these same in a "real life" situation we find ourselves unable to perform at all.

While I can't speak for everyone with ACC, I can describe my own experience living with this lifelong disability...I can tell you that one can get to a point where one questions one's ability, sincerity, one's sanity and worth in society as a whole, when forced to fit our "round peg" into the square hole that society provides for us and demands we fill.

Since diagnoses, as I have mentioned many times before, my life has changed radically for the better. Of this there is no doubt.  Insofar as self-acceptance, and encouragement and embracing the many gifts and skills I do possess my "old life" is but a shadow of who and where I am today.

Having said that, I, as a 52 year old man, am left with very little options to function and fit into the "real world."  The so-called "jobs programs" available, have never been focused on long term successes, rather in their own numbers and figures.  Even going through "vocational rehabilitation" I have constantly run into unfunded and under educated "help" only interested in forcing my round peg into their square hole, long enough for them to increase their funding.
arrow pointing to the missing corpus callosum

It does not help that ACC is so little recognized and understood.  I've run into problem in my own state of California, trying to access services for the developmentally disabled where they will tell me "ACC is not a 'legally recognized' disability" and therefor I am not able to access needed services.  You tell me, if having a hole in your brain, is not a disability, then what is?

"The impact of AgCC may become more evident as a child reaches puberty. In a typical brain, corpus callosum functioning becomes much more efficient around ages 10-12, as the callosum mylenates. As the corpus callosum becomes increasingly functional in their typically developing peers, children with AgCC often appear to fall behind. Particular areas of difficulty are social understanding, social communication, comprehension of non-literal language (for example vocal inflection and proverbs), problem solving, executive skills (for example organization, flexibility in response to change, and planning), emotion recognition in others, self-awareness and personal insight. People with AgCC may appear somewhat rigid in their interests and socially simple. In this sense, AgCC symptoms may "get worse" with age ... however, often these individuals learn coping skills well into adulthood, so they may also "get somewhat better" with age eventually." (from the works of Dr. Lynn Paul Kerling)

HOW is this not a disability?  I still constantly run into ignorant doctors, therapists, and workers that want to shuffle me off because they do not understand.  I was actually told by a worker at the California Regional Center when applying for benefits that because I had ACC I wasn't ASD but rather schizoaffective, which I might add has been struck down dozens of times by multiple doctors as being inaccurate and untrue.  Because ACC is a neuro-anatomical structural defect, it is not included in the DSM, which strictly speaking is an insurance billing manual for the American Psychiatric Association.  WHERE does it leave us with ACC?

I myself, have reconciled with the fact that I will always be poor, and the poor are always shuffled off to the margins of society.  This does not mean that I will not continue to fight for the rights of others, that I will not continue to try and make a change for the future generations.

It is my hope that when my book comes out, I will be able to help make that difference.  One in four thousand of us are born with a disorder of the Corpus Callosum.  Again, I would argue that would make it the second most common disorder (next to ASD) affecting people today, rare, but not for those who have it.

As I'd mentioned last week, I will soon be participating in the Corpus Callosum Research Program study of Dr Paul.  While I'll have the added benefit of some personal enlightenment, this research will likely have untold benefits on future generations that I will never know about, and I'm fine with that.  Yet, I will never stop working to educate the public about ACC and its effects on an individual.

In the meanwhile, my heart breaks for all of those (us) that continue to live poor and unnoticed, unhelped, on the margins of society.  We will never be a "free land of opportunity" until that opportunity is equally available to all its citizens, as it certainly is not at the current time.

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