Scooter and Sticky Analyze Their Community Disability Life Situations
Scooter and Sticky are enjoying their occasional Gimp girl luncheons at Ted’s Pizza on the Square. Taking turns interviewing each other about their respective disabilities, services, adjustments, and continuing constructive life style changes orchestrates their rambling. They both admire the statement from the White House lawn celebrating 20th anniversary of the A.D.A. that “Civil rights are not self-enforcing”. However, practical daily life strategies for different disabilities vary greatly and consume so much energy. Their discussions challenge them back on their respective tracks toward goals within shifting social systems neither fully understands. It’s scooter’s turn to quiz Sticky to organize her recent experience
Hey, how’s your perennial search for services comparable to SAAVI in Tucson or Lighthouses around the country?
Growl. As far as I can tell, New Horizons is still the main game in town, actually way out there in PV. Yet another vision specializing occupational therapist closed up her practice, and I’ll miss her. New Horizons and some other “vendors” held a Low Vision Expo at the Adult Center where I met some new Vision Losers, but I’m not appraised of the exhibit’s after effects. I met a home schooling mom of two children with disabilities in the PPL elevator who confirmed my experience. It’s hard to get services except by piggybacking on vocational rehab or school special ed if you are retired.
I just keep wondering how many other folks like me are out there looking for services, not even sure what they really need. Who in Prescott would have stats on my, or your disabilities, like how many diagnosed and how many being served? And how do people get referred around the state, medical, charity, nonprofit, etc. like groups? Somebody must know, but our intuitions raise the right questions.
Don’t the eye doctors handle that? You mean, they don’t address like how your life changes and where to get help?
Not often in my experience. One referred me to Second Sight rehab but that operation is long gone. Usually they send you off to the Phoenix based Low Vision practices which offer high priced reading equipment as well as magnifier thingys. But nobody on the medical side seems to have a charge code for dealing with life changing effects of their diagnoses.
My best source for about 15 years has been MDSupport.org, run by retired music teacher Dan Roberts. His motto is that “no patient should leave after a diagnosis feeling it’s hopeless”. That website and mailing list is a Wikipedia of vision-related information and the mailing list for Macular Degenerates regularly connects cool people and their diverse experiences. But the docs ignore anything not optical or retinal and live over in another silo. This predicament is national, really international, so MdSupport helps patients prepare questions to prod information out of the medical people.
There’s also locally People Who Care seminar on Confident Living that introduces vendors if you happen to hear of it by word of mouth or Daily Courier notices. This is good introductory information but progressive vision loss means continued learning new skills for the rest of our lifetimes. I’m proof of how much a motivated person can learn on her own, but, let me tell you, it’s really hard work for my family as well as myself.
So, exactly what kinds of services are you talking about?
First, and foremost, is OMT, Orientation and Mobility Training. Like how to use my precious $35 white cane, clamber up stairs, find buildings, and, horrors, cross streets. I had to wait a year after getting put on the list for state paid OMT specialist Kim in Sedona but she retired or quit. Finally, I broke down at the People Who Care seminar I went to and got lined up for lessons with a Special Ed OMT person during the summer. Those few lessons gave me independence and staved off isolation, with Yavapai College as my main OMT practice area and now playground for courses at OLLI. Ironic that the cost of that OMT would be far less than any single trip to the ER! but OMT isn’t generally available.
Other stuff Lighthouse and SAAVI do are called ADL, Active Daily Living, like cooking, labeling clothes, signing checks, and other things you never thought about needing to learn. Braille literacy and computing technology, too, of course. My favorite Prescott helper,, probably unknown to anybody else, is the Talking ATM at Chase Bank – plug in ear buds, listen to menus, punch the keypad, and walk off with your cash. Beautiful!
A lot of that sounds like regular training to upgrade your skills. How do you keep up? What are all those gadgets you carry around?
For years I’ve listened to podcasts which I automatically download to hear recorded demonstrations, interviews, group discussions, even book clubs, all organized by Blind people. Like Main Menu from the American Council for the Blind, AccessibleWorld.org community rooms, and Blind Cool Tech. It took some mind warping, but I crossed a cultural boundary when I discovered how much the Blind could teach me living partially sighted.
A friend took me to exhibits spread across several hotels at LAX showing all the assistive tech products I’d heard about on podcasts. Even Stevie Wonder showed up at one booth I was scouting. So, I bought a lot of listening devices and shifted all my reading, TV watching, and writing to using these audio feedback hand-held gadgets. Here, this black phone looking box, called a BookSense, has over 1000 books I’ve collected from Bookshare, a volunteer and publisher supported distribution system. For $50 annual BookShare fees, I also get NYTimes best sellers and NewsLine NYTimes, Washington Post, New Yorker, and more. Reading just keeps getting better and rarely causes me much hassle.
Now, this past year, I’ve picked up the iPhone, really a little computer with an ecosystem of apps that merge specialized assistive tech into the mainstream. Like, my iPhone tells me currency, sends away pictures I cannot identify for near instant interpretation, plays my podcasts, scrolls my Twitter TimeLine, and also reads books and news. A little voice tracks my fingers moving on the screen and gives me complete control of the device.
My computer setup is a simple Windows netbook, costing about $300, with a free screen reader to feedback my keyboarding and speak out text on the screen. I think I spent about $1500 in 2011, not as much as most years, for upgrades, new tech, and services. Students and employees get more expensive stuff through tax paid funds, boosting prices in the so-called disability-industrial complex, so people like me are paying out of our retirement funds. Ouch, but worth it!
So, you must be a great community resource! Do you give courses in this tech wizardry?
sure I do offer but most people losing vision have trouble making this tech transition. Our brains have to shift from seeing to hearing and most people want to hang on using vision as long as possible. Magnifying from their computers works, but is very slow. I’ve helped a trainer from New Horizons learn the computer screen reader I use, called NVDA. But there isn’t a critical mass of local users like me to convince new Vision Losers to try mysterious gadgets and overcome what I’ve dubbed Synthetic Voice Shock.
Honestly, it’s lots of hard work to learn all this, took me many months on each gadget to get comfortable. We need more teachers and understanding of how this tech works. My best experiences have been a 2 hour session on “Using Things That talk” at OLLI. And I have a nicely organized collection of the podcasts I’ve learned from that I can distribute on DVD or 4GB flash drive.
If I understand you correctly, most of what you Vision Losers need is out there, but not integrated into any location in Prescott, let alone understood by the medical profession. What is the crux of this problem?
It’s like the whole system is broken, locally. Nationally there may be a serious lack of trained vision rehab specialists,made worse by geographical distribution. It takes enough consumers, i.e. Vision Losers like me, to support these services, but there also must be a healthy referral chain from eye doctors and sharing of personnel among retirees, employment seekers, and students. It’s a mess! And nobody has the stats out in the public of this city to help understand how big a mess!
Now, remember, this isn’t charity we need. Occasional potlucks or outings might be nice, but personally I want to maintain and grow my relationships among people with broad interests, like AAUW and YC OLLI, and maybe even an OCCUPY or political sideline. Plus family and remote friends.
Of course, lack of public transportation is a major barrier, but asking for that invites a smack down. “Costs too much! Gotta keep every street re paved and broadened and make people think this is a great place to retire”. That brings up another topic, about how much money is really sitting around in nonprofits or federal funds or raised annually that could generally improve services? Who knows? Who cares?
One cool idea I’ve heard about elsewhere is an “Aging in Place Concierge” service. I actually used something like this in Tucson, called Red Rose, two women operators who would do whatever you needed for flat rates, like $35/hr. Pet sitting, rides, mail sorting, light repair, whatever plus knowing the existence and quality of services for outsourcing. I’d love to find that in Prescott!
I heard about some new communications practices that seemed important, like preventing loss of life as in Katrina. Did you participate in an emergency preparedness test last year?
No, was there one? I think it’s the national Broadband.gov effort in the FCC that is rolling out those tests. Like not relying only on radio and those scrolling lines on TV screens I cannot read will be replaced by a system sending notices in forms I could use, including ring tones, vibrations, and text messages on my iPhone. But communities have to take responsibility for linking up with the funding and implementation of that national provision. Who in Prescott does that? Where do I sign up?
Out of curiosity last year, I joined in listening to the White House Disability monthly conference call. Lots of info, like transportation regulation changes, oh, wait, not to worry there. But medical, independent housing, broadband, education, across the board good stuff is happening. But not locally unless someone is on their toes to learn and spread the word. Who would that be?
Just wondering, do you ever hear the A.D.A. mentioned in your circles within Prescott?
Oh, the YRMC got a little play in the Daily Courier and a big notice in DisabilityScoop and Disability.gov last year. Actually, it sounds like they did the right thing, training their personnel, after a deaf complaint denying ASL. I wonder if that training is available at other city sites.
It would also be interesting to know how many A.D.A. complaints and grievances have been filed and how they were resolved. Like the VA, colleges, and city parks and streets are covered. YC campus is pretty habitable, at least for this long cane walker. However, I don’t understand how anybody on scooter or wheelchair or care-giver arm can negotiate those advertising placards in front of every store downtown. Often I get stuck among them, the benches, and plants or run smack into oncoming pedestrian or bike traffic as I decide which way to go around those damned barriers. Another common problem is construction on sidewalks, like how am I to know how to get around a ditch or find another route? And, ice on sidewalks and bridges gives me weeks of Cabin Fever, missing my 1.5 mile daily walk on those blessed smooth streets. But who do you contact about these problems
, trying to avoid a formal complaint? Do you know?
Hey, Scooter, do you know the term TAB, as in Temporarily Able Bodied? Not like other civil rights, disability is a category anybody can join any time. And everybody will join if they live long enough. Plus, disability doesn’t happen just to individuals but also to that person’s family, friends, and colleagues. Yes, disability should be a universal concern.
sounds like there are Lucky Vision Losers who won the lottery being located near services. And then there are Unlucky Vision Losers stuck in a frayed web of confusing groups with no central organization looking after them?
What do other cities and regions do?
A quick web search turns up many “Mayor Disability Council” where city offices, disability service vendors, charities, and, most important, disabled people themselves. You can even listen in on recordings of the San Francisco Disability Council, with transit, independent living, A.D.A. complaints, and more on the agenda with feedback and suggestions from “consumers”, i.e. people with disabilities, many far worse than you and I experience.
Eureka! Let’s get together with more representatives of other disabilities and form some kind of Community Council that really addresses these problems we’ve been talking about.
Great idea! Read on fora draft to get us started. Educate! Advocate! Liberate!
Prescott Arizona Really Needs a Disability Council
- Collect and publicize data on services available, services provided, and services needed
- Publicize and implement federal and state guidelines and mechanisms, such as emergency preparedness
- Coalesce and channel charity, nonprofit, federal/state/city funds toward services as articulated by citizens with disabilities
- Match citizens with disabilities to boards, advisory groups, city committees, etc.
- Publicize and accept A.D.A. complaints and grievances and promulgate resolutions
- Support peer communication among people with different as well as same disabilities and common needs
- Provide public training on organizing events, managing facilities, and communicating with persons with disabilities
What do other cities do with their disability services and citizens with disabilities?
Chatanooga Mission Statement
The Mayor’s Council on Disability’s overall mission is to promote policies, programs, practices, and procedures that give equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability; and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.
Chattanooga Tennessee Disability Council Mission Statement
Jacksonville FL Mayor’s Disability Council
- Southern Arizona Association for Visually Impaired SAAVI
- MdSupport.org Macular Degeneration Support
- New Horizons Independent Living Center NHILC Prescott Valley