Wednesday, September 15, 2010

Employment Difficulties and Aging With Disabilities

Affirmative actionImage by quinn.anya via FlickrOver at Aspitude!, there is a series of interviews on employment with autism and aging.  It seems like a number of women are running into similar problems as I have with burnout at midlife.  A lot of problems seem to be relating to sensory overload, inability to keep up with the pace, and the need for down time or retreat to a sensory friendly environment.    We have followed a very similar pattern of burnout and reintegration at midlife.    We have all worked in major institutions, corporate or educational, and have found that the very structure of such institutions poses severe burdens on our neurological systems.

 As my gentle readers know, I have been flogging away mightily at therapies with the goal of returning to the workforce.   At the end of my therapies, I will go back for another neuropsychiatric assessment to see if I still meet the criteria for "NonVerbal Learning Disorder" or whether my problems are "Sensory Integration Disorder" and "Executive Dysfunction" to which gifted and talented individuals are more susceptible.  How much of the hearing, vision, vestibular and executive dysfunction problems will be completely fixed, I don't know.  I am getting the sense that I will be able to do most normal things without compensation and some extraordinary things with some compensation.    According to the feedback from my optometrist and audiologist, being completely fixed in every way for every day is probably out of reach; however, I will be able to do many things with or without compensation. What the parameters are, I still don't know.

However, I do know what life is without therapy.  I remember my parents coming home and being completely whipped in the evening and weekends.  They were exhausted and spent a lot of time on the couch in front of the TV in the evening.  My mom had to take a nap after a day of working as a  bookkeeper before she could make dinner for us kids.   I don't know how much fatigue could have been mitigated with therapy or if that's the way it is when you get older with the type of disabilities that run in my family.
The interviews over at Aspitude  point out the faster decline of many skills for folks with disabilities as they age.  These are points well taken.   These women are effectively out of the mainstream workforce, at least, for now.  They are looking to make their way outside of large institutions and they are looking to accept themselves and have society accept them for being what they are.
However, I don't know how sustainable living with this decline in abilities is going to be.  Let's look at the larger picture of the Great Recession.  We have a national unemployment rate of over 9% and, it is probably a lot more depending on how you calculate it and what part of the country you are in. 75% of autistic individuals are unemployed.  I can't imagine anyone who does not have family support to be able to not afford to work.  A lot of people can not afford to support a disabled family member.  One in Seven people in America are living at the poverty line ($10K annual income for a single person; $20K for 2 people; $40K for a family of four).   Twenty-five percent of our children are on food stamps. Most people in this country have less than $50K in savings for retirement.  They are wholly dependent on Social Security, a program whose future looks cloudy both in terms of sustainability as well as benefit level.  Section 8 Housing has huge wait lists.   SSDI is a bureaucratic labyrinth.  I pity anyone with executive dysfunction trying to navigate the system.  You can't get on welfare in this country as a single individual.  When you can get welfare, there is a 5 year lifetime limit.   Able bodied people are imagining that they will be dying in their boots:  working till they drop.   What they are planning on doing is beyond me.  Who hires the elderly?  Never mind, who hires the elderly disabled?

Nor am I sure how sustainable a business model will be for those disabled trying to help the disabled outside of institutions.  The model predicates that there will be an adequate supply of individuals and family members who have the extra income to attend seminars, buy books, and pay for consulting.  With the middle class shrinking, this is an ever smaller market.  Let's see:  selling books at $20 each,  collecting seminar fees between $50 to $300 a pop and consulting fees at $100-300 an hour.   Subtract the cost of advertising, travel, meeting rooms, materials and you can calculate how much you have to sell to earn a living.  Oh yeah, and don't forget about taxes and business fees. See how this averages out month after month and year after year and you will know what your salary is.    I think some people will be able to make it but not everyone will succeed.  The income will also become more irregular and harder to plan for.

Many advocates for neurodiversity seem to be asking autistic people to put themselves in positions that require the least interaction with other people.  At first, this looks like a reasonable thing to do given sensory integration and social skill problems.  However, in a wider context, you are asking to be placed in positions that are most likely to be outsourced to cheaper, healthier people overseas.  Healthier people who are willing to work 70-80 hours per week in conditions without regard to ergonomics and don't complain.   Computer programming, financial planning, legal research, medical billing,  etc are all going overseas and they are not coming back.   A major Wall Street bank hiring plans are as follows:  20% high cost areas in the US, 40% low cost areas in the US, and 40% hiring overseas.  In major corporations, whole divisions are closing and they are not coming back. 

Add to the outsourcing, the emphasis on team building and customer support skills and folks on the spectrum are hosed.  

Oh, I forgot my favorite:  Rank and Yank.  This delightful personnel policy brought to you courtesy of Chainsaw Jack Welch at General Electric details how managers should rank each individual and lay off the bottom 10-30% annually.    If you don't get along with your manager, you are not going to make it.  With mass layoffs, it's easier to mask:  just throw in the autistic bodies onto the heap in the layoff charnel house.
The quest for advocacy for neurodiversity  is just the beginning of trying to get workplace accommodations necessary for people on the spectrum.  However, we are trying to get affirmative action at a time when the mechanisms for civil rights enforcement has been effectively eviscerated!  Has anyone wondered why there hasn't been a  major change in civil rights with the first African American President? We thought we elected a man with the power to change things using the government.  What we didn't realize was how truly hollowed out the government bureaucracies charged with enforcing these functions have become.  

The Civil Rights Commission, which is the governmental arm for enforcing civil rights,  can not attract major civil rights organizations to its own convention!  Why?  For the past 8 years,  it has been focused on fighting for reverse discrimination!  I'd have to check, but I don't believe that it has brought more than one or two cases supporting civil rights!  People interested in truly fighting for civil rights have left the commission.  In fact, the subject for its latest convention is whether the Commission should exist or not!  The Democratic commissioners and one Republican commissioner are not attending the convention as a sign of protest over the Commission's inaction.

Since 2000, the Supreme Court has been consistently ruling against affirmative action.   We have a conservative majority on the Supreme Court that will be there for decades.  A number of the justices are mere 50 year olds at a time when our life expectancy is increasing to be 80, 90 or 100 years old.

This is huge. Diversity Law depends on the same principles, legal precedents and much of the same legislation that Civil Rights for Race, Religion, etc. have depended on.   The interpretation of the 14th amendment is in doubt.  You remove the pillar that works for equality in one, you remove the foundation for equal rights in another.

So, the upshot of this is that the disabled are left without much of a stick.  The techniques for advocacy are good techniques to learn as "Good Client Relationships" can keep you out of a world of trouble and keep a situation from escalating.   However, they are predicated on the wishes of a supervisor; if it pleases him/her to listen, they will grant the accommodation. But, the very mechanisms that provide a stick to mandate accommodations on a society-wide scale are being dismantled.  Lawsuits are very time consuming and expensive to mount. 

I am starting to think that a constitutional amendment is going to be necessary to guarantee rights for diversity including neurodiversity.   The issue of employment is going to be more pressing with a tidal wave of people with autism aging out of school.

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