Recently I had the opportunity to be part of a local delegation of parents who have adult children with severe cognitive disabilities. We met with the executive committee of our state’s Board for People with Developmental Disabilities. They’re a state agency receiving some Federal funds charged to make recommendations on service delivery, offer resources, hold conferences, etc. Considering new federal CMS regulations and the Workforce Innovation and Opportunity Act soon to be signed into law, there’s talk of phasing out center-based workshops and day services.

All of us are in favor of work at a competitive, living wage for all, no matter whether the person has a disability or not. All of us are in favor of full inclusion of everyone in community life. But the devil is in the details, as usual. Some people because of disabilities will never be able to work and earn a living wage, but may be able to do some work tasks slowly or with a lot of help. Some may not be able or willing to volunteer in the community. If work and preparing to work are the only options available, I fear that these folks will be shunted aside and not have a place to go and things to do.

When states get rid of sheltered workshops (as such services used to be called), they do so for many good reasons, and e.g. they were poorly run, warehoused participants and didn’t move people through the service to competitive employment where possible. There may be bad programs in Wisconsin, but the local ones I’m familiar with are well run, staffed by caring individuals and do help people move on to real jobs in the community if possible. Just like in every community, there aren’t enough real jobs and sometimes the community does not want to embrace a person with major disabilities in their business, their church or neighborhood, etc.

It reminds me of de-institutionalization of the mentally ill in the ‘60’s. We thought the money and services would be delivered in the community. Sometimes that worked well but sometimes people fell through the cracks and did not get needed mental health services. Nowadays we have high rates of people in prisons, jails and living on the streets with mental health issues. So many people are better off because of de-institutionalization, but some aren’t. I fear by closing all work centers/sheltered workshops we may do the same thing to another group of vulnerable individuals — people with severe cognitive disabilities.

So I went to a meeting with several awesome parents who wanted to lobby for a continuum of services, not just for their loved ones, but also for other people’s adult children with cognitive disabilities. Our pleas were met with statements like: “Our hands are tied” and “change is hard”. We didn’t get a meaningful discussion of how we can work together for good services for all. But I’m betting these activist parents will have more discussions with their legislators and other state agencies and won’t quit until they do get some real help from their government.

Maybe they’ll nudge services into looking at options other states have found useful. A friend who works in Washington told me that “In Washington, we have a service called ‘Community Access’ for people of working age whose barriers to employment cannot be overcome by the system. When I was county manager of a community access program in an extremely rural area, what we did was identify the person’s gifts, contributions, and interests, find the kinds of resources and activities that were available in the community, and connect people to those resources and support them to be successful in them.”

It was a privilege to labor alongside the parents even though the particular disability they’re dealing with is different from mine. I was blessed to have parents who advocated for my needs to be met. It’s only fair that I carry that forward for somebody else’s kids.

schneider book club_blogtour
Sometimes one has a chance to do something big and good. Such a chance came my way in 2002 when my father died. As he was nearing the end of his life, he said “you’ll probably give your inheritance to some good cause, won’t you?” Since I had a job and no dependents other than a guide dog I said I would and started thinking what good cause would honor my parents. I came up with children’s book awards for good books about the disability experience. Toward the end of June we celebrated ten years of these awards being given by the American Library Association.

When I was young there weren’t many books about people living with disabilities other than The Little Lame Prince and biographies of Helen Keller and Louis Braille. So I started the Schneider Family Book Awards through the American Library Association. I drafted criteria (modeled on the Coretta Scott King awards but for disability content). I turned over the criteria and a big check to the ALA and awaited results.

A committee of librarians (all volunteers) puts hours into reading and discussing each year’s entries. They give three awards per year to authors or illustrators of children’s books about the disability experience. When children go into the youth area of their libraries now, librarians can recommend books to fit their situations, whether they are a child with a learning disability who can read My Thirteenth Winter or a blind child with a sighted parent who can read Looking out for Sarah printed both in print and Braille, they’ll know that they’re not alone.

Each year there have been more books for the judges to pick among. My hope that a well done award would attract writers is working! The publishers of the award winners also receive positive notice which makes them more likely to publish disability content.

Several years ago when I was looking for a publisher for my book for young children about living with disabilities, Your Treasure Hunt: Disabilities and Finding Your Gold I received several turn downs from publishers who liked it a lot (or at least said they did) but were unsure of the market. So I ended up self-publishing and hustling to publicize it. If publishers know there is a market because there’s a prestigious award, they’ll publish more in this area of diversity.

I usually don’t interact with the committee except at the yearly celebratory lunch. One year a graphic novel was chosen, which felt like a gut punch to me because just like when I was a kid, a large part of that book was not accessible to me. I shared my feelings with them and worked to try to figure out how to make it accessible for blind kids. The National Library Service had one of their great narrators try to describe the graphic sections. They did it in such a way that blind kids could pass a test on it, but I’m sure this is a situation where a picture was worth more than a thousand words.

The committee has missed a few worthy candidates for the award like Good Kings Bad Kings by Nussbaum and Accidents of Nature by Harriet Mcbride Johnson. Since my background is not in English those books may not have had the literary merit they look for, but this reader could tell that the authors (who both had disabilities) got the disability parts right. Too many good books for all to get awards is a good problem. In the next ten years, I hope for many more great books, increased quick access in alternate formats like Bookshare, and more authors with disabilities rising up to win these awards.

When I started this project, I had no idea how to do it. I just had fire in my belly for kids to have interesting and realistic books about disability life experiences to read. Moral of the story is: go for it and the details will work out somehow. The pebble tossed into the pond has widening ripples. This blog is part of a blog tour about ten years of the Schneider Family Book Awards. Read some more blogs and good luck winning free books!

Giveaway information -

One person will win a set of all 3 Schneider Family Book Award Winners from 2014. Participants must be 13 years or older and have a US or Canadian mailing address.

(Just an FYI: There is one winner total, but readers can enter from any blog participating in the tour.)

Here is the link for the giveaway. WordPress will not accept the widget code but the link should take them to where they can fill out the form to official enter into the giveaway. Your techie assistant can look at Nerdy Book Club to see how they included it.

Link for giveaway:

http://www.rafflecopter.com/rafl/share-code/NjQ2ZTlhYjVhNzBmYjkyM2MyZGQ2MzUzN2UzNjBkOjU3/

I’m rereading Joan Chittister’s excellent book, The Gift of Years and reflecting on the gifts my years have given me this week.

  1. Trying to organize a neighborhood meeting is like herding cats. As soon as I get some cats lined up, others have other ideas. By the time I get back to the first batch, they’ve wandered off. The gift of years is I know it will all work out somehow and you can only please some of the people some of the time.
  2. Since our church secretary has left, I no longer get the bulletin or newsletter electronically. Having gotten them for about nine months, I really do miss them now. I’ve emailed all the right people and gotten some vague promises, but no bulletins. The gift of years is I can keep persisting and going to plan B, C, D…to achieve my goal of knowing all the parish news.
  3. A friend helped me set up my television for the digital transition Charter is doing in this area next week. When all the publicity says how “easy” it will be and how “wonderful” the results, my life experience teaches me it’s going to be quite difficult and probably minimal benefit will follow. Sure enough, it took a couple hours and figuring out other steps that should be in the step-by-step guide but aren’t. In addition to the fact that as a blind person I couldn’t have done it alone, my years have taught me that work shared is much better and more fun. We prevailed and my friend left with horror stories to swap with others across the community who are walking the same road.
  4. Several people asked me to do volunteer work for them and I was able to say quickly and calmly that I’d love to if my accessibility needs were met. Self-acceptance is much better than when I was younger. Donnalou Steven’s song says it much better than I can: http://www.sunnyskyz.com/happy-videos/736/The-Older-Ladies-Anthem-I-LOVE-This-#KUlFEiAbf4L5Feow.01
  5. Back to that no church bulletin problem. I went to Mass and a frail elder who sits in her wheelchair in the back row with us, read me the announcements. She was pleased to be able to give help as well as all the receiving of it she does. The gift of years Chittister mentions that is still in process for me is trusting in the universe that we will be given what we need.
  6. Chittister says “Life is about becoming more than we are…about being all that we can be.” I wonder what gifts next week will bring.

I’m fortunate to live in a community that usually meets my needs and asks me to be an active community member as well. Here’s how it worked this week:

I went to the luncheon of the Eau Claire Community Foundation to see the grant I started given out for the first time. It is called Access Eau Claire and is designed to give a local non-profit a small grant to help it be more inclusive of people with disabilities in its programs. The Advancing Hope fund that won will give para-transit passes for rides to our local soup kitchen to people who need to ride para-transit, just like we have free rides in the winter for regular bus riders. Because of a communications mix-up with the gal who represented the organization getting the grant, I didn’t have a ride to the luncheon. So I called a neighbor who dropped everything and gave me a ride. I got there a half hour late and made a grand entrance just before the program started, but I was there! Community came through for me.

The next couple days dedicated volunteers and I shopped for and delivered pet food and supplies (mainly litter) to thirty households of elderly, disabled and poor pet owners. I started this We All Love Our Pets program eight years ago and now run it for our local Humane Association. The animals are so cute and it’s fun to hear the pride in the owners’ voices as they tell us about their beloved companion animals. Again community comes through with volunteers who give time and a tank of gas to driving around delivering.

When a friend who is a mom of a high school student asked me if I’d be a fortune-teller for the lock-in party they have for seniors after graduation, I just had to say “yes.” As I did research (both book and Internet) to get ready I realized fortune-telling and my real career of being a clinical psychologist had some big similarities. Friends and neighbors have let me practice on them and have lent me clothing and gaudy jewelry. One neighbor made Luna and Madam Katherine a fine sign with stars and the moon on it. A classroom at the high school was transformed with fabric and little twinkly lights into the fortune-telling parlor. Three of us fortune tellers held forth. The other two had done it before and were much more definitive in their predictions than I was; e.g. “roll the dice and I’ll tell you how many times you’ll be married and how many kids you’ll have.” Mine were more of the “you will have some troubles but you will get through them and then will have some good luck.” form. Luna’s favorite customer was a young man going into engine mechanics who loved to fish. I think she was working on him to take her fishing, but he said he preferred cats to dogs. The next day we both staggered around like we had hangovers. 2:30a.m. is definitely past our bedtime. Note to self: next year take an evening nap!

The rest of the week filled up with giving blood, reading Scripture at Mass, giving Animal Kisses to a friend’s new baby, and recommending a thriller, Kill Switch to friends. These are activities of daily life for many people. The only difference for me is a bit of extra effort to get the written word in Braille or a book on CD in the case of the thriller (involving a noble military working dog, by the way). Research for fortune-telling was of course done on the Internet with my talking computer.  It’s all part of the ABCDE’s of living with a disability:

A: asking/advocating for what I need different
B: breaking the bubble of isolation by reaching out
C: costs more sometimes
D: discrimination happens
E: it takes more energy and time to live the good life when a disability is on board.

I hope you’ve enjoyed scenes from my community. I’d be glad to tell your fortune, if you’d cross my palm with some bit coins (preferably marked in braille)!

Two recent news items and how they were reported got me thinking about what gets reported, what doesn’t and what images of the blind are favored by the media.

The first story came from Scotland and concerned a gal blinded as an adult who couldn’t see anything unless it was moving. The neurology was fascinating and the remedy of practicing looking at things while rocking was novel. The only thing that troubled me about the story was that it didn’t tell anything about her life other than what she could or couldn’t see. It seemed like a case out of an Oliver Sacks neurology book.

The second article was about a blind young man who will get to play football in college at a division I school, I think. The article talked about all the extra coaching he’d had and all the extra practicing he’d done to accomplish this feat but also quoted him as saying he wasn’t exceptional. However, he was okay with being held up to others to help them realize “you can do anything”. I disagree. I could not do what this young man is doing no matter what! To me, telling kids “you can do anything” is equally unrealistic as telling them “you can do nothing”. The trick is figuring out what you can do and how to do it. Tiffany Carlson’s blog with its reference to a TED talk on “inspiration porn” http://blog.unlimiters.com/2014/05/27/hate-being-called-inspirational-too/ also points out the harm that being called “inspirational” does to the person put up on the pedestal.

On the other hand, just in the last week I was made aware of two stories that haven’t made it to the media and may never. One concerns the work a friend of mine who teaches blind kids did to put together a games day for one of her students. Remember the fun things you got to do as elementary school wound down in late May? Trip to the park, the zoo, etc. This lucky student got to play braille games with a grandfatherly blind person in his community, demonstrating the fun things you can do if you learn to read those dots and letting him visit with an adult blind person who lives a full life. I don’t know if they talked about guy things like how to bait a hook or what, but I’ll bet it wasn’t the unrealistic “you can do anything” tripe.

The other story that probably won’t get written concerns a statewide pattern in another state an acquaintance was describing to me of mismanagement of rehabilitation money. Blind people were not getting needed training to pursue competitive employment. When this person approached a reporter, they were told the newspaper didn’t have the resources to do investigative journalism.

So this week anyway, we get stories about curing the blind and blind superstars who are inspirational. For a truer picture, consult your friends with disabilities about the stories that don’t make the news.

Do you remember the Aesop’s fable about the fox and the stork? The fox offered the stork dinner in a flat dish and the stork offered the fox dinner in a tall jar. Sometimes I think of this as I interact with sighted friends and acquaintances. The following three examples will give you a flavor of these strange encounters.

I get my church bulletin electronically for which I am grateful. For the last few weeks I’ve noticed part of a story by our former priest about a Christmas memory in it. Since we’re in the Easter season, it piqued my curiosity. When I emailed the parish secretary she told me it was embedded in the page somehow but not to worry it didn’t show up in print so the sighted parishioners wouldn’t be confused. I replied that I was confused a lot so I guessed I was cool with confusion, but glad it wouldn’t be bothering the sighted folks.

The same day as this encounter I was talking to the head of a local non-profit organization. She asked me if I knew “Sue”. When I said I wasn’t sure, she told me that “Sue” was blind and needed an interpreter and surely I knew her. I’m used to the “blind people all know each other” idea, but needing an interpreter was a new wrinkle. I said that interpreter usually made me think of deaf people who use the services of sign language interpreters sometimes. She said that yes, she meant deaf. So I guess it’s broader than “blind people all know each other”. It’s “all people with disabilities know each other”!

Next day I was talking about a gift for a friend’s birthday with another friend and I suggested marigolds. I thought we should check what color we wanted to get with the recipient of the gift. The friend asked me did they come in different colors and what were they. I merrily started describing yellow, red, orange and variegated ones. Then I laughed and said that I thought what I said was true, but maybe I was making it up. My sighted friend said she surely didn’t know so I the blind person could tell her anything I wanted to.

The moral of these stories? For me, it’s be patient with sighted folks; they have no idea what you do or don’t know and can or can’t do! For those of you who see, you may identify with what a sighted friend used to tell me: “just because I can see, doesn’t mean I see”!

I’ve been blessed with many moms over the years. One was my biological mom but others have mothered by supporting and guiding my growth. I want to thank all the moms out there, be they biological, psychological, spiritual or whatever.

My biological mother was a sensitive, intelligent, and artistic woman who stayed at home raising children in the 1950’s and 1960’s instead of pursuing her career in special education of the deaf. She helped with our homework, led the Girl Scout troop, and often told my brother and me what she had given up for us. After I was in high school, she began taking painting classes at the local art center and enjoyed them greatly. Health problems, exacerbated by alcoholism, led to her death at the age of seventy-five, leaving much traveling and painting undone. She turned her grief at having a blind child into pushing for me to have access to public education at a time when this wasn’t common and for me to succeed at the A-plus level. She was a Tiger Mom before the term was invented! If I had a snapshot of her to show you, it would be of her lying on the living room couch with a book in one hand and a cigarette in the other, reading aloud to me.

A psychological mom I was blessed with was an internship supervisor who always took time to turn a work-related question into a “How are you really?” visit. She taught me fine points about dressing, acting, and being professional. I watched her apply her philosophy of “honey attracts more flies than vinegar” enough times to see how well it worked. Sometimes when I don’t use that approach and it doesn’t work out so well, I can hear her warm southern voice saying “Maybe next time…”.

A woman who gave me spiritual direction when I lived in Iowa comes to mind as a spiritual mom. When I’d voice disappointment and anger with God, she’d validate the feelings and quote St. Teresa of Avila’s challenge to God of “If this is how you treat your friends, no wonder you have so few”.

Thanks moms of all kinds! We need and appreciate you so much. Reach around and pat yourself on the back and/or grab a cup, glass, or bottle of your favorite beverage.

When I was growing up, I’d never have used the words “proud” and “disability” in the same sentence. Nowadays they fit together nicely sometimes. During this week:

On Easter I had a twelve-hour intestinal bug that laid me low. I was well nursed by my Seeing Eye dog who sniffed my breath and my other end to make her nursing assessments of how sick I was. When I was truly sick she left me to sleep checking on me occasionally but not demanding any unnecessary attention. When she thought I had returned to the living, she asked for more interaction. She was hired because of her guiding skills because of my blindness, but the nursing attention came as a bonus, as well as the friendship, love, playfulness, etc. I’m proud to have been a guide dog user for forty years.

Fully recovered the next day, I talked about Occupying Aging with a group of a dozen people who have various lung diseases of serious natures. We laughed and shed some tears together about the ups and downs of living in the real world with disabilities. I wouldn’t have been part of this fine group of humans if I didn’t have a disability and hadn’t written my book.

Afterwards I enjoyed a fine Chinese dinner courtesy of the gal who invited me to the group. She has Parkinson’s but still can drive and strongly offered me rides as needed. I’ll probably take her up on the offer some time because she’s paying forward for when she’ll need rides and I respect that thinking.

Then I listened to an Indian-American comic on his delightful observations on being a minority. Waiting For 2042 by Hari Kondabolu is his CD, available from Amazon for about ten bucks. Ethnic minorities encounter many of the same interaction issues like being stereotyped that people with disabilities do. His riff on what jobs people think he has because he’s Indian-American made me roar. Having had people assume I can sing, or teach blind people, I can relate!

The next day I finished reading Ben Mattlin’s memoir Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity. He’s also a comic of sorts and a truth-teller of his disability experience with a disease that leaves him using an electric wheelchair with mouth controls to live his life as a father, husband and public radio writer. Recently I also read I’m Walking as Straight as I Can: Transcending Disability in Hollywood and Beyond by Geri Jewell, a comic and actress who has cerebral palsy. Her story of coming to grips with being gay and having cerebral palsy in Tinsel town made for interesting reading. Reading books like these reminds me I’m part of a group, disabled people, who were late to the civil rights/human rights revolutions of last century but who can take pride in our work for access and inclusion.

I rounded off the week with a talk to fifty seniors looking forward to occupying aging with disabilities or who at least want to be able to help their friends do it with grace and style. Then I played Scrabble for the fundraiser for the local literacy organization and gave away large print books at an assisted living facility for World Book Night. I do both of these projects because reading is such a huge good part of my life that I want all to be able to share the love of reading. I think having had limited access to books as a child because of blindness makes me treasure them now even more.

To polish off a wonderful week, I got to play Audio Darts (the board tells you where your dart lands). It was on my bucket list of things I wanted to try in my life and one of my dear friends took me to Minneapolis to do it. It was great fun and made me proud to meet the blind gal and her sighted husband who invented and marketed the board. http://www.audiodartmaster.com

Maxine Hong Kingston says in her meditation on turning sixty-five, I Love a Broad Margin to My Life, “I’m standing on top of a hill; I can see every whichway — the long way that I came, and the few places I have yet to go.”

This week I turn 65 and somehow this has caused me a lot of reflection about what do I want to keep doing, stop doing and start doing. Guest lecturing and writing are definitely on the keep doing list. Writing is mainly this blog and contributing occasional posts to other blogs like www.disability.gov. I may let serving on some boards go, especially the ones that feel like rubber stamp boards. My activism on disability issues consumes a lot of my energy and I worry how I’ll keep it up as I age. My encounters with services for seniors worry me. I’ve had organizations tell me they’re for seniors without disabilities. When I point out that half of seniors will develop disabilities they shrug as in “let them go to nursing homes”. I have a sneaking feeling that eventually I’ll need to balance accepting graciously what can’t be changed with changing what can. Think repeating the serenity prayer a hundred times a day would get it through my head?

Our church had a day and a half mini-retreat this weekend which gave me a good chance to assess where I stand. It’s clear I need to do more prayer time and more delighting in God’s creation. I’d also like more grace. As Mary Oliver said: “You can have the other words — chance, luck, coincidence, serendipity. I’ll take grace. I don’t know what it is exactly, but I’ll take it.”

It’s been a week of celebrating, working a little, napping and enjoying walking on clear sidewalks.

With friends both near and far, (two-legged and four-legged), good books, music and food, and meaningful volunteer work, I’ll make it through the next era of life.

Did someone declare this week as National Disability Access Advocacy week without telling me?

First I had to advocate for a podium at ground level for a meeting I was part of instead of having to go up on a portable stage with little steps and no handrails. As I pointed out, this was not just for my benefit but also for ladies wearing high heels, elderly who don’t see and/or walk too well, etc. The only way I got action was to kick it up to the level of the funders of the event.

Next I had to advocate for work arounds for preparing background materials for a workshop I’ll be part of that would work for a co-presenter who has a hidden disability that they are not disclosing. At the end of the week I had a church retreat with a study book we had struggled hard to get ahead of time on CDs. The access issues at the retreat included extra printed materials that I didn’t have, so I couldn’t sing, pray or read aloud as others did and the usual daily human-human interactions about would you help me through the lunch line? Are there any seats at a table with other people before you dump me at a table by myself? I’d give my advocacy on the fly skills about a “B”, but in one instance the holy spirit whispered the perfect comment to me and I used it to good effect—we all got to laugh together.

Near the beginning of the retreat, we’d been asked to pick a rock and write on it with some kind of marker what we wanted out of the retreat. I picked my rock but didn’t ask someone to write on it because I couldn’t read it and why should I? At the end of the retreat we picked our rocks back up and read them aloud. I found mine and said I had written on it in invisible ink, only visible to truly holy people. Trying hard to live out the call to make peace, I emailed a group I’m part of that had unthinkingly excluded me from a group activity suggesting a more inclusive way next time.

Wouldn’t you know it; I also got the perfect background material to read for this week in my email halfway through the week. Terri Mauro blogs about children with disabilities, parenting issues, advocacy, etc. Her excellent article is at http://specialchildren.about.com/od/ieps/ss/What-Kind-Of-Advocate-Are-You.htm, and the quiz that goes with it is at http://specialchildren.about.com/library/advocacyquiz/bladvocacyquiz.htm. Of course I found a bit of myself in all the styles: Avoidant, Apprehensive, Accommodating, Assertive, and   Aggressive. These advocacy opportunities never come in a vacuum. The week was full of the usual, guest lecturing, spring vet check-up for Luna, and trying to sneak in time to read Divergent which I’m really enjoying. Life is so daily!

As I look forward to next week, lines from two songs are running through my head: “When will they ever learn?” from Peter Paul and Mary’s song “Where Have All the Flowers Gone?” and “Hard Times Come Again No More” from a song by that name by Stephen Foster. What’ll it be? Stay tuned.

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