When I was a kid I played Army and caught frogs. I often joke that my adult career in criminal justice was a natural consequence of those activities.
What else could I do?
It never occurred to me to become a disability rights advocate. But in some measure that is what I have become. Because it is right. Because it is necessary.
I have disabled children, and that has been the impetus for my speaking out about prejudice and discrimination against the disabled and their caretakers. I’ve seen and heard the problems.
That’s my story, my dog in the fight.
But this ain’t about me.
Consider the rapidly growing number of people who must care for the disabled. Autism and Alzheimer’s are two examples of lifestyle limitations which impact many families. Most of those families probably never thought about disability, caretaking and all that it entails.
This could be about you.
Prejudice and the discriminatory conduct which results from it is often difficult to see. It tends to be below the surface. It is more than overt name calling. That is but the tip of the iceberg. The bigger portion is the low level, hidden discrimination. And the underlying beliefs which support discriminatory behavior are an even bigger part the base of the iceberg.
A caretaker of a mentally retarded man wrote this to me:
“My reflection on discrimination toward disabled people is the public’s general attitude of either ‘it’s not my problem’ or angering comments of ignorance because they have never experienced another human being with disabilities, especially one within their own family. This is the most difficult form of prejudice or indifference I have dealt with.”
Friends and family who don’t or won’t understand the lifestyle restrictions caregivers have is depressingly common. They fail to grasp the limitations on family activities due to the disabled, even after visiting our home and seeing reality in motion. A meal at our house should be a teachable moment. It is a three-ring circus of spills, food grabbing, unintelligible speech, incessant sign language, etc.
And snow? Well it is beautiful in our back yard, but a recent snowfall caused about 10 phone conversations between myself and school districts (kids with disabilities go to different schools and must be bused there separately). Bus company, bus drivers, schools, Intermediate Unit, and spouses are all part of the transportation network.
Workplace discrimination is alive and well.
Supervisors who blatantly disregard dependent care responsibilities that caregivers have are far too common. The examples of discrimination keep coming in. The deplorable behavior of some supervisors may be due to a lack of education. They may not have received adequate training from the human resources (HR) department. Or appropriate socialization from their own supervisors. They may be part of a workgroup beset by bullying where the disabled and their caretakers are just naturally preyed upon.
Human Resources departments themselves may even be guilty of neglect. Or worse. There are HR departments that simply go through the motions in developing disability compliance programs. They see their role as solely complying with governmental regulations rather than being socially responsible. HR shortcomings run the gamut from poorly designed forms to failure to train supervisors in dealing with disability issues to incompetent investigations of disability-related matters. HR folks may also cave in to management pressure to get rid of disabled employees even if it goes against their better judgment.
We also have dysfunctional government agencies. Bureaucratic foot-dragging is common, creating delays in getting funds and services to those in need. Sometimes this crosses the line into outright negligence: the government worker who wrongly denied a family benefits and also caused them tax troubles. The agency investigating allegations of disability discrimination that doesn’t really investigate. The human service workers who can’t stay off their cell phones long enough to supervise those in their care.
There are depressingly abundant instances of lost paperwork in government agencies. A caretaker said this:
“We have learned that each letter, form, application etc. must be mailed with UPS tracking with a designation signature. This is the only way that government paperwork can be proved to have arrived at the intended office of red tape where it is subsequently lost or shuffled in stacks of vanilla folders only to place a call to us in two months to inform that his benefits will be cut off due to not submitting the required forms.”
Government itself, and the politicians within it, are also culprits. The Pennsylvania budget crisis created all manner of trouble for both government agencies and nonprofits serving the disabled. The Governor’s Office withheld approval letters for Educational Income Tax Credits. This caused much anxiety among nonprofits who depend upon corporate donations.
The disabled and their caretakers are not political pawns. They are people who need some help. Politicians who deprive them of that help need to be held accountable. Individual voters, disability organizations and investigative reporters all have a role to play here.
While the disabled themselves are often hidden away, their caretakers often work to support them. In plain sight.
Know any?
Know what their responsibilities are? Bottom line: we need to turn this around. But we need to honestly see it first in order to do that.
Remember that disabled folk and those who care for them are not going away any time soon.
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