Warning, this post is acronym filled, and may contain nefarious allusions, probably inappropriate but nevertheless, they exist.
UNITED NATIONS Copyright - A new treaty designed to promote and protect the rights of the world’s 650 million persons with disabilities opens for signature at the United Nations on Friday.
At its core, the Convention of the Rights of Persons with Disabilities ensures that persons with disabilities enjoy the same human rights as everyone else, and are able to lead their lives as fully-fledged citizens who can make valuable contributions to society.
Forty years ago, as an upper-division undergraduate student, I was offered one of those scholarship jobs that go to jocks and related others. These were legacy-based inheritances, passed along to the next class of student athletes by graduating seniors, eagerly anticipated by the younger, who have heard-it-through-the-grapevine that this or that is the coolest chance at getting paid to do nothing, or close to it. My offer was not for one of those cushy roles (lifeguarding the women’s gym pool {only male allowed}, or driving the little tractor that picked up golf balls), but rather a heritage role for those of us in a special and unique club (the fish lane). Ours was the strand that provided support staff for the Education and Psychology departments’ on-campus education environments.
Thus I was obliged to interview for the role of motor performance skills instructor at the research facility for children with learning disabilities. Being a talkative sort, and relatively comfortable with public speaking, I was regarded as sufficiently acceptable and given the job. I ended up keeping it well past my graduation, up until the end of my first year in graduate school. My only previous teaching experience had been as an infant swimming instructor, teaching children under the age of two some basic water safety skills (it was the era of massive build out of SoCAL home pools), but lack of such experience was not apparently a critical consideration. No, what seemed to matter most was the capacity to interact and get along with children of the rich and famous (those who could afford to get their kids into the school) who were identified with a range of learning disabilities (and related handicaps, etc.).
Now this is long before there was the IDEA Act, its subsequent amending legislations, ESEA I & II, ADA, etc., etc., et al. We didn’t have IEP’s or 504s or EIS documented meetings or plans. We didn’t have FERPA, or OSED’s TA&D, to be guides or regulatory oversights. What we did have was: an incredibly dedicated core staff, professors and researchers from departments and psychiatric institutes, observers and lecturers, symposia and conference. Thus, we had meetings, lots and lots of meetings. My personal education in special education was gleaned from these meetings and daily discussions about this or that kid’s issues or problems of the day. As someone who was focused on looking forward to teaching in the university, I didn’t have the slightest interest in all this elementary work; it was just a good job, good hours, and a source of daily learning something, like a daily vitamin supplement.
Years later, working in public education environments, serving on SELPA’s, developing transitional, annual, and triennial IEP’s and 504s, meeting with teachers and parents—I was grateful and appreciative of the experience I had had back in the university. I could relate, I could understand, I could sympathize. I could sense the subtleties behind determining whether this or that kid needed or could best be served by mainstreaming, or pullout, or core services; I could advocate for students who needed to leave the regular public setting and spend their high school period in special programs focused on their needs and best interests.
I also started paying attention to the populations who attended the music festivals and concerts that I helped to produce and direct. Several of us passionately argued for all-inclusive environmental supports for the altered-abled, working diligently to insure that people with all manner of disabilities, handicaps, issues, could enjoy and experience our events to the fullest extent possible. Indeed this past weekend, at an Earth Day event, I watched a young woman sign the lyrics being sung by a raging punk band (how she knew what they were singing is beyond me?).
This has all been in a way of introduction to my rant for a more equitable exchange between those who deserve, and are entitled to, the assistance of the greater society in order to participate in parity with all others. With the advent of all of the legislative regulations and policies, more and more of our nation’s population are asking for and receiving an increasing share of revenue-based supports that offer significant participational parity. The future doesn’t look so bright either in terms of the predicted dramatic increase in citizens needing and deserving more care. This comes at a cost, one wisely paid by the taxpayers, to the overall wellbeing of the society as a whole, particularly in 21st century educational environments, but also in the day-to-day lives of everyone.
Under FERPA and ADA, parents and adults are informed of their rights to insist that this or that accommodation or praxis (regardless of the expense) be provided for their student. Such efforts are laudable, but grossly misjudged by the general population, and further mishandled by the bureaucratic institutions that are our public services. But this isn’t what is upsetting me at the moment. NO, what’s got my craw is what is happening on the public transit with all of the people willing to demonstrably exercise these rights. They are exceeding, rudely in some cases, the balance of parity, stating quite openly demands that they be given greater privileges and access than is equal or a fair share.
I serve on the citizens transit advisory board, a large and unwieldy group of active folks, mostly seniors such as myself, who have the time and freedom to serve on these types of councils, commissions, boards, and groups (I serve on no less than four, with less time to myself now than before I retired). We discuss how to better serve the region with more accessible and reliable public mass transit. We discuss numerous alternatives, fee structures, road conditions, driver and passenger needs and complaints, etc. And the biggest bone of contention is participational parity for disabilities; not because of the costs but because there are so many are becoming downright abusive and demanding.
For example, the other night, riding home on my regular route, an old Russian woman was sitting near the front. The bus driver and I usually share a casual conversation about the latest political or social upheaval of the day, sometimes getting other passengers engaged in some interesting social discussions (some of the kids are okay you know, they are paying attention and reading). Well last night this older lady (perhaps ten years my senior if that) starts shrieking “Shut up! Shut up!” pointing to her ears. She speaks little English but made it clear that any conversation on the bus was detrimental to her wellbeing. Flabbergasted, I politely refused to be quiet, but did speak in more hushed tone. Finally she thought she was at her stop, but became confused and needed to re-board and ride another block further. It turns out she had lost the remote control for her hearing aids and was unable to lower the volume. She could have turned them off of course, or turned one off, or manually turned them down, but no, that wasn’t what she wanted.
We are the medical industries’ service center for a vast region of western states here. There are numerous hospitals, training facilities, medical labs, rehabilitation clinics, hospice centers, and so forth. Specific bus routes are dedicated to servicing these facilities as well as those for residents who need them. There are hundreds of residents who require and use electric wheelchairs, powered walkers, and other support utilities and equipment as they move about the city. The transit system has been more than willing to expend resources to develop special transit options for people to use, smaller more maneuverable vans, better ramps and kneeling buses, and other such offerings.
Yet there is not a day that goes by without at least one (and usually several more) altered-abled person demanding that their needs and rights extend to the point that they directly interfere with the rights of all others. Rather than wanting to ride the special vans, people insist that they ride the regular route bus. Since they ride virtually for free or reduced fare, take up two to four seats (severely obese, wheelchairs), use no less than fifteen to twenty minutes of extra time for loading and unloading, demand that the bus stop at their intersection regardless of appropriate stops, and so forth—these rude riders are beginning to attract negative and detrimental attention from the taxpayers and others in the community. They are performing a disservice to themselves and to others like them.
They insist that the drivers punish kids for being loud (and sometimes the kids are loud, and disrespectful, but not always). They demand that drivers move passengers out of seats just in case some other person of need might later require it, claiming that all of these types of seats are only for them (signage clearly states in the best language possible, that a person need only ask to use the seat if necessary and that is the priority). The public has been incredibly supportive and tolerant over the years, and struggles to continue to be so. But the tipping point is coming, particularly stoked by cases of wheelchair operators (and disabled others with walkers, canes, and dogs) who do so while under the influence of drugs and/or alcohol. There is nothing quite so provocative of irritation as a drunk handicapped person. Rude, loud, demanding, insistent—there are cases now where law enforcement must interdict to remove the person from the bus or the main downtown terminus. It is a problem and becoming a worse one, particularly as the regional VA facilities fill up with veterans of three wars, bitter and unhappy, treated poorly by those who serve them. Grumpy and irritable, they lash out verbally (sometimes physically) particularly at other younger handicapped and disabled people seen as competition for services and attention. We are seeing more and more complaints about these interactions from transit users, drivers, public media, and other citizens.
I don’t know the answer; I don’t know how to make this better. If you have some ideas, please post some comments. In the long run, this will be a growing problem across the US, as my generation of baby boomers feel more and more entitled to all of these sorts of services, while disdaining others who need them too. Veterans will need and demand more care; kids suffering from the ravages of environmental toxicities will be angry that they must share these ever limiting resources.
UPDATE: Over at Tom Dispatch, Chip Ward dicusses some of these very same issues from the perspective of the public library, another of our well served civil commons:
Ophelia sits by the fireplace and mumbles softly, smiling and gesturing at no one in particular. She gazes out the large window through the two pairs of glasses she wears, one windshield-sized pair over a smaller set perched precariously on her small nose. Perhaps four lenses help her see the invisible other she is addressing. When her “nobody there” conversation disturbs the reader seated beside her, Ophelia turns, chuckles at the woman’s discomfort, and explains, “Don’t mind me, I’m dead. It’s okay. I’ve been dead for some time now.” She pauses, then adds reassuringly, “It’s not so bad. You get used to it.” Not at all reassured, the woman gathers her belongings and moves quickly away. Ophelia shrugs. Verbal communication is tricky. She prefers telepathy, but that’s hard to do since the rest of us, she informs me, “don’t know the rules.”
Margi is not so mellow. The “fucking Jews” have been at it again she tells a staff member who asks her for the umpteenth time to settle down and stop talking that way. “Communist!” she hisses and storms off, muttering that she will “sue the boss.” Margi is at least 70 and her behavior shows obvious signs of dementia. The staff’s efforts to find out her background are met with angry diatribes and insults. She clutches a book on German grammar and another on submarines that she reads upside down to “make things right.”
