Access, It's an attitude!

We took the family out to see Night at the Museum 2 at our favorite local theatre. Why is it our favorite? Accessibility of course. It has wheelchair seating in the first row and unlike a competing franchise, lots of chairs for companions or families. We can all sit together! And they have nice ramps at all the regular entrances. In fact, no stairs. A great separate restroom so we don't even have to jockey past all the regular stalls to get to the "big one" at the end. Even the snack area has low counters and is wide and easy to navigate. 

More importantly, the staff there are always a pleasure. They are helpful without being obtrusive or indulgent. They always greet all three of my children without singling any of them out. Most refreshing to me, this theatre employs a number of people with disabilities, so my children feel at home-- this place reflects our lived experience.  And my daughter who has a disability interacts with folks who are doing work that demands a great deal of interaction with the public. I believe this is part of the reason the whole staff there is so much more skilled than the public at large at interacting with our family. They have peers and colleagues with disabilities and varying abilities; interacting with us is a normal part of their lives.

Access is so much more than a ramp, it is an attitude of normalcy, an experience of being welcomed and fitting in. I am so glad to have places like this, and as my children experience more inclusion at school, I look forward to a future where most places are like this. Thank you again to the many generations before us who worked on ADA and IDEA. 

Superstition and Universal Design

I've been thinking a lot about universal design as we work with contractors and local agencies, charities, friends and family to figure out how to remodel our five year old home to make the first floor bathroom accessible for our daughter. 

I know, a five year old home, right? How could it not be accessible already? 

Superstition. I think it is about superstition. 

When I asked a local politician about building codes and why they were not written with this in mind, for example, why any door on any new building in our county or state would be less than wheel chair width, he said first "cost". After I finished gaffawing and pointing out how this is simply erroneous and disinformation (when you build something from scratch, that is the cheapest time to make it accessible, the cost excuse only comes into play during the remodel ordeal) he said something very insightful, and I think very true.

"Not everyone needs things to be accessible! Why build everything that way for the one person who may every use it?"

"Because," I should have said, "You may be that person. I hope it never happens, but YOU may become disabled on your way home after our conversation on universal design." Random events. It is not about luck or karma or some kind of cosmic intelligence doling out rewards to the deserving. About 10% of the population is disabled, after these wars it will be higher, and that 10% is impossible to predict. 

In our school district, more than 10% of our students have a disability, but the board and most of the community still act as if it were a 10 in 10,000 occurrence. 

The only thing I can think of is superstition. 

No one wants to act as if they could be next. No one wants to plan for life with disability when it is not part of their immediate experience. No two able bodies people want to get married and buy a house that is fully accessible, even though the odds are that it would be a good idea-- most of us in old age will need some modifications to our home, if not before. No mother wants to conceive and imagine any thing other than "healthy, ten fingers, ten toes." No district wants to imagine serving even MORE disabled students (as one member of our administration says often, "they keep coming here for the services." So, we act as if ignoring the need will some how prevent the need.

Yet houses built today will have several owners; they should last a century at least. Schools are built and will serve whoever lives within their boundaries for many decades. Sidewalks, streets, subway stations, new malls... the same. We build as if everyone were like us. 

It is way more expensive and inconvenient to remodel. 

And in my experience so far, limited though it may be, building as if disability does not exist does not ward off disability. 

The least effective way we have to deal with our fear of disability is to ignore it. To build our infrastructure as if it were exceedingly rare and unlikely. It is like throwing salt over our shoulders, saying a prayer for a spontaneous healing of Rett Syndrome. Sure, prayer can't hurt, but you might as well get off your knees and say those prayers with a wrecking bar in your hand 'cause ain't no body out there building all houses accessibly, even though a lot of babies needs it. 

And while you're down there, maybe say a prayer that people will come to their senses and build as if disability might someday effect them or someone they love. It won't bring bad luck down on any of us, and it might give the next family a better shake the next time random events play out and they need an accessible bathroom on the first floor. 

Universal Design-- it is an attitude, more than anything. Every architect should have to spend a week in a wheel chair before getting a degree. 

Inspiration

Jana's post on inspiration gave me lots to think about today. (Thanks, Jana!) Coincidentally, it came on the same day that I have been reflecting on an aphorism I saw in a bathroom (inspiration comes in unlikely places...) that said "Follow the path of your destiny with purpose and an open heart." 

I've been so overwhelmed lately with the processes involved in caring for my girl (though not actually caring for her, or her). The whole applying for MediCal, IHSS, Regional Center, IEP etc. business just really gets me down. 

But reminding myself that this is my path, my destiny or my fate and to approach it all with purpose helps me to channel the fierceness I sometimes feel. I always know my purpose with her- to let her know she is loved and safe and beautiful. But is there a larger purpose? I guess the one I fall back on for inspiration is this (a good one for a staunch agnostic):

I expect to pass through this life but once.
If, therefore there can be any kindness I can show or any good thing I can do
for any fellow being let me do it now...
Let me not defer it, or neglect it,
For I shall not pass this way again.

Stephen Grellet (Etienne de Grellet du Mabillier)

And it reminds me of all the inspiring people who flagged the trail, then graded the track, laid the gravel and left room for us to pave the road. Thanks to all those families and parents who found a purpose in this fate and worked toward IDEA, ADA and the other small policies and works that make our lives better. 

Moving on with a renewed sense of purpose, and a more open heart, at least today.

Funding Disabilities

I am in New York on business. Miss my kids. 

And wow, am I tired of writing about Assistive Technology. If I had a magic wand, I would make all that magically better and move on. But, respite is essential, and I am taking respite from the topic. 

I came across a lovely article in a local Brooklyn rag about funding challenges for a local organization serving people with developmental disabilities-- The Guild for Exceptional Children. This after a conversation with a very good friend about AT and the need to develop more developmentally appropriate software that interfaces with the My Tobii eyegaze system... to which he suggested with the sweetest intent: there must be foundations out there that would take that on. 

It seems particularly ironic with this article in the paper today. And parents of children with disabilities know it just ain't so. There is not much money in services for disabilities. Not much of a market for specialized products like the My Tobii or the ECO. More attorneys work for districts blocking children's IEPs than work for children to secure their rights. It is always, all about money. Why should your kid go without so that my kid, who clearly will not amount to anything, should get a really fancy computer that helps her add and read Clifford? THAT is friggin' socialism. BAD.... bad socialism. YAY survival of the fittest.  (Sorry, listening to Sean Hannity today in the cab at about 80 decibels bent me out of shape).

The thing is, it is easy, so easy for the right to say that every one has a right to life, but not so easy to say that everyone has a right to quality of life. Quality ain't cheap. Quality for everyone is socialism.

Here is my final, line in the sand, quid pro quo: I will concede to restrictions on abortion. Really, I will the instant, the very instant, that  medical care, food, shelter and water and care by highly-qualified providers are the legally protected rights of EVERY child who has taken their first breath in our great nation, including every child with a disability. 

Is that so much to ask? Just a little socialism, Sean. For the kids. 

Requesting an AAC assessment

This is the stance that earned me the title militant mom: Communications with schools are court admissible evidence and IEPs are legal contracts. 

 I learned from experience that a potential audience for every communication with our school district is the Office of Procedural Safeguards at the California Department of Education. So while I do try to keep the letters civil and polite (why not?) I also make sure they let the district know I know my child's rights, and they have all the i's dotted and t's crossed.  Not that I want to go to court or file complaints, everyone loses when we do. But when the district knows that we know we can, and will, they are more likely to serve and we are far less likely to go. 

The squeaky wheel gets grease, and my district trained me to squeak. 

Below is a template I wrote, based on our letter requesting assessment for a couple of local families who find their child in the position ours was two years ago-- in a district that made conflicting claims: this child was not an AAC candidate, and the district is happy to keep experimenting with PECS and sign. 

An AAC user fits this profile: receptive language higher than expressive langauge + intent to communicate. News flash: non-verbal children who use PECS are AAC users. These children have a right to assistive technology under IDEA.

That is just about all kids with autism. They should be assessed by a qualified provider. 

Districts are not so excited about this. Why? PECs and sign are practically free (especially compared to dynamic speech devices) and about the only thing most speech therapists know and are trained in (getting a device and a full AAC system requires an AAC specialist, another expensive service). 

 We need to build knowledge of and demand for these services. They make all the difference. Our daughter went from her preschool goals and curriculum to second grade curriculum in a few months, once she had a device and support to use it. Here is the template:

____________________________________

[Your address here]

District Contact (principal, program specialist, etc)
District address

RE: REQUEST FOR ASSESSMENT
Child’s full name
Date of birth
School of attendance and grade level

DATE

Dear [insert district contact name here]

Under the Disabilities in Education Act of 2004, my child has a right to devices and services which allow her to access the educational curriculum in the Least Restrictive Environment (20 U.S.C. §1401(a)(25,26); 34 C.F.R. §300.308) (34 C.F.R. §300.308). This includes Augmentative and Alternative Communication (AAC) devices and services.

Our daughter has a diagnosis of Rett Syndrome, which causes severe apraxia. She therefore has effectively no use of her hands and is non-verbal. The prognosis is that she will not recover speech or hand functions with therapies.

Because our daughter uses {insert examples of her communication here, such as , proxemics/going to the thing she wants, sign, picture ions, gestures/pointing, reaching; utterances) to communicate we know that she has higher receptive than expressive language. She is by definition an AAC (American Speech Langauge-Hearing Association).

Because of her prognosis and the difference between her receptive and expressive abilities, her current systems limit access to her range of language and vocabulary. Further, her current systems require her to access communication with her hands, which is inappropriate to her diagnosis. Her current AAC systems are therefore inappropriate for her educational needs and inaccessible due to her diagnosis.

We request a medically based AAC assessment from a qualified outside provider.

We understand that you will send us an assessment plan that describes who will provide the assessment and how it will be completed. We also are aware that you have sixty days to complete the assessment and look forward to hearing from you soon.

Sincerely,




The parents of (insert your child’s full name here)

Robert's Park a Model of universal design

Every week I try to post info about a local outing that is friendly to families like ours that have typical and disabled kids. 

Robert's Regional Park in Oakland, California is worth a field trip, even if you are out of the immediate area. Rosemary Cameron of EBRP told me about the new play structure at Robert's while we were discussing accessibility issues during a frustrating visit to Black Diamond mines (not accessible, once you get out of your car in the handicapped space in the parking lot.)

But I went over to Robert's this morning on a reconnaissance visit on her recommendation and as I stood at the top with my daughter's service dog, I got choked up. Seriously, I was embarrassed to have tears in my eyes. But there it was. 

If you, like we, have been to so many places and had to sit with your disabled child on the sidelines and watch others run off to play, you might too. 

The structure is built on the hill and there is a long graded approach to the area. The whole thing has deep rubber mats below and full ramp access to the top. Accessible slides and a modified climbing wall. All the signs have Braille and inscribed alphabet signs and can be read by touch. There is even a cradle swing for big kids. If you want to spend the day, there are picnic grounds. The pool is accessible as well, according to Rosemary, though it was closed while I was there. 

All I can say is thank you EBRP! This park is a model for the nation. If you want to play, you should go. If you want to see how all parks should be built, you should go. If you are a superintendent or a board member, please go. Landscape architect? Go. Park Board member? 

Well, you get my point. 

That's where we are getting ready to go, right now. 

Accessibility in Yosemite

Two weeks ago I went to Yosemite with my mother, who has Parkinson's. It was her Christmas wish to visit Yosemite in the winter-- a place she had spent many happy hours in her youth but never seen in snow.

Here is my rundown on accessibility in our flagship national park, revised based on experience. Ironically, when I asked about accessibility I was told by a staff member who had clearly been trained to respond to this, "As a national park, we are a federal government agency and comply with all aspects of the Americans with Disabilities Act."

With over 4 million visitors a year, many of these foreign nationals who come from countries with no legal status or protections for persons with disabilities, Yosemite is an opportunity to show the world a particular American strength: Universal Design.

For all the urbanization, YNP falls sadly short of the vision of ADA. Just like home, urban does not equal accessible.

F: YOSEMITE LODGE AT THE FALLS
F: PARKING/ENTRANCE WALKS: The handicapped parking is located across the bus loading drive-through from the entrance to the lobby, and the curb cuts take one across a wandering path with no cross walks. At one point we started through one curb cut to cross the street and had to look for the other, which was located diagonally across but not marked. The handicapped entrance is what my brother in law Jim used to resentfully call a "servants entrance" about a 50 yard detour away from the front steps up a ramp that is out of sight of the public. The Awahnee entrance is much better.

F: WALKWAYS: It had been snowing when we arrived, and while the stairs and walks for the general public were shoveled, the ramps and curb cuts were not. When checking in with my mother (in her chair) I explained that we needed a room we could access (I was thinking ahead of the snow). The nice young man at the counter assured me this was and sent us across the road, through a parking lot and down snow covered walks to a room several hundred yards and a few snow banks away. We came back and requested a different room. When I suggested we should preview the room to see if we could actually get there, he was less than helpful. The rooms are all located in separate outside buildings with few covered walks, so shoveling is essential. I crossed several areas by running my mom's chair at full speed through the snow and shoveled our own walks into our room.

D ROOMS: One can reserve an accessible room, which we did not because the only accessible rooms have only one queen bed and a roll away and like people with a disability, we were traveling with children. The regular rooms are completely inaccessible, the doors to the bathrooms are to narrow even for a walker. The showers are inside standard tubs and there are no grab bars anywhere.

C CAFETERIA: The chairs are too close in the dining room. No one offered assistance, in spite of the fact that we clearly needed help. Many things are too high to reach.

BIKE TRAILS AND ACCESSIBLE TRAILS:
B+: The new trail to the Yosemite falls bridge is very nice, as is the valley floor trail from the lodge into the meadow. The only issue we had is, once again, the curbcuts from our rooms were missing, so that we had to take a long detour to then roll through the parking lot before we could find an accessible entrance to the trail. Everyone else? Cross the street in a cross walk. BOOO.

AWANHEE:
B+: We went here for dinner one evening. Surprisingly, this historical landmark was the most accessible in the park. We did not see the rooms, however. In spite of the fact that the only accessible bathroom was up the elevator (unpleasant but not uncommon.) There was an accessibility map in the lobby, unlike in the lodge, showing where all the accessible trails and restrooms are. The staff were respectful and helpful, a difficult balance to strike, in my experience. Even in the national parks, It is good to be wealthy, especially if you have a disability.

BADGER PASS:
F: Now, if you have not a disability yourself, you might say a ski area does not need to be accessible (which this is absolutely not- stairs everywhere, no ADA bathroom, and of course, snow and no covered walks). We did not even find ADA parking. But if they offer adaptive ski lessons (call two weeks ahead)- don't you think they would make the lodge and ski school accessible? Good thing my mom opted not to come up and instead hung out at the lodge napping and drinking hot chocolate. Too bad she did not get to see her grandchildren ski. It would have been nice if she could have hung at the ski lodge and watched from the window.

CURRY VILLAGE:
F: We could not even get into Curry, due to the snow. Or the ice rink (again, she wanted to watch her grandkids skate for the first time). I'll have to go back in summer to evaluate this part without snow.

SHUTTLE BUSSES:
C: Thank goodness they have kneeling busses. And wheelchair spaces. The driver was very nice- always a plus. Unfortunately, she did not know how to use the wheelchair tie downs, and when I showed her how she explained that she had asked when they were trained on these new accessible models and the trainer told her she did not know how herself, and did not think it was important! How lame is that? The park service invests in new ADA compliant busses and then does not properly train the drivers in their use.

So, for all the urbanization of this natural wonder, there is little to recommend it in terms of accessibility. That is a shame. So much of the development in the park is to make it seem more familiar, less strange and wild-- really to make it seem more accessible to the masses of able bodied people. It is tragic, in my opinion, that this development has made it more like home and less of a natural wonder, a place to connect with the serene, the tranquil, with wild. I have always resented the intrusion of fast food, ATMs, markets full of fake indian goods made in other countries, many low quality restaurants that highlight the worst genres of American food. I would resent it less if the city were actually were accessible, because at least accessible development would be for the purpose of making Yosemite the experience that Muir and Roosevelt meant it to be, a "tonic for the soul", instead of simply familiar in all the worst ways.