Can’t see it? Just do it. Stuff for the blind.
Can’t see it? Just do it. Stuff for the blind.
“As architects, we’re visual animals. The interesting riddle…is if you take sight out of the equation, what makes for good architecture?” –Chris Downey
A few weeks after Chris Downey started work at an architectural firm in San Francisco, he noticed something wrong with his vision. It turned out he had a tumor wrapped around his optic nerve. After surgery, he eventually lost all of his vision not to mention his job.
Today, he is a key architectural consultant for a rehabilitation center for a VA hospital in Palo Alto. Funny how the door closing on your vision can often open new doors elsewhere. Downey must’ve felt like he hit rock bottom when after having to deal with a tumor and subsequent vision loss, he also had to deal with unemployment. In a city full of unemployed architects, he was sure he was the only blind one. Where does one go from here?
Downey’s story is just one example of how, despite vision loss, one can become empowered to do even bigger, greater, and more compassionate things. To read his story in The Atlantic, click here.
Okay, so what I thought would’ve been my first organized bike ride on our tandem bicycle actually turned out to be the Moonlight Ramble, a ride benefitting Bike Houston, an organization that advocates for Houston to move toward becoming a bike friendly city. One of their most recent endeavors was getting the city to place bike racks on Metro buses so that bikers could transport their bikes using public transportation. Yes, this is something that almost every large U.S. city has been doing for years, but Houston, with their SUV and pick-up truck culture, has yet to yield to cyclists.
John and I were sitting at home last night doing what couples do when there’s nothing else to do on a Saturday night–we were watching The Silence of the Lambs (a movie that my husband had never seen until yesterday)–when John saw on Twitter that there was an organized bike ride to be held at 2 AM. And with nothing better to do, we decided to ride, convincing our friend Daniel to join us. So three hours later, we were at the George R. Brown Convention Center with our gloves on and helmets strapped under our chins. There were two paths: the short route (10 miles) and the long route (20 miles). Of course, we planned to do only the short route as it being two in the morning, we weren’t too keen on getting to bed at dawn.
They started us off in waves promptly at two. At first, there was a lot of stop-and-go traffic since we were obeying traffic lights. But soon, impatience got the better of everyone, and we were riding through red lights so long as there was no oncoming traffic. We rode through downtown and saw all the clubgoers stumbling out of the bars, honking at us for getting in their way and permitting them to only go ten miles per hour down downtown streets. We rode through the Medical Center, the Museum District, the Galleria.
“Where’s the split off for the short route?” Daniel asked one of the volunteers once we were seven miles in.
“Oh, that was way back there. Back at the fountain,” the man said.
After much cursing, we decided it was easier to just finish off the 20 miles than backtrack to the short route fork. We biked up the 610 feeder, down Memorial, all the while feeling perturbed that we were so much closer to home than to the Convention Center and thus, the end of the ride. Then John got the brilliant idea that we should break off from the route, bike home, and Daniel would take John to pick up his car at George R. Brown.
“That is the best idea ever!” I said, patting John on the back. Suddenly, things looked brighter, hopeful.
“Wait, my car keys are in John’s car,” Daniel said.
Egad! Now we really had no choice but to finish off the 20 miles. I nearly cried when we rode past the Memorial-Washington intersection. So close to home, yet so far.
We reached the car at 3:48 AM, earlier than I’d thought it’d be, later than Daniel had hoped it would be.
“Worst idea ever,” John remarked as we drove home.
Later, he apologized to me for “putting me through this.” But in actuality, I didn’t mind it. It was something different to do on a Saturday night. It was my first time participating in an organized ride, and on a tandem nonetheless. It gave me a chance for some much needed exercise. It felt nice to smell and hear things other than the smells and sights of Memorial Park. I got to say I survived biking 20 miles, my longest ride yet, and felt good about it–no soreness, no pain (other than the bike seat jabbing my crotch for two hours). Mostly, it was nice to do something with my hubby, something he used to do without me. Yes, this is only the beginning. I will slowly invade all his activities, seep into every crack and crevice of his life. Soon we will be one of those couples that can’t do anything without the other. Soon I will learn to golf.
This week, John and I signed up to participate in the upcoming 2010 Tour de Donut on November 7 at 8:00 AM in Katy. The Tour de Donut is a charity bike ride supporting the Texas Gulf Coast and Louisiana chapter of the Make-A-Wish Foundation the largest wish-granting organization that brings joy to children with life-threatening medical conditions. The Foundation first started in 1980 when seven-year-old Christopher Greicius who was undergoing treatment for leukemia wished every day that he would grow up to be a police officer. One thing grew into another, and the Make-A-Wish Foundation was born, becoming big enough to warrant pop culture references (e.g. in “The Wink” episode of “Seinfeld”). In all seriousness, though, the Foundation does some great work, and with a cousin’s one-year-old daughter who died last year from neuroblastoma, I’m all for this line of charity.
The Tour de Donut’s concept is to bike one of two routes (28 vs. 55 miles) in the fastest time possible. A-ha, but here’s the trick. The more donuts you eat, the more minutes get shaved off your cycle time. The irony is blatant, but it’s all in good fun. This will be John’s third year doing the ride, and he said he’s even seen someone make a necklace out of the donuts to munch on while biking. Hardcore. But the grand prize this year, so I hear, are two ski lift tickets to a resort in Colorado. (Can anyone verify this?) So I’d say the snowy fun to be had may be worth the fashion sacrifice of a donut necklace.
This also marks our first supported ride on our tandem bicycle, not to mention my first supported ride ever. Hopefully our KHS holds up. We need a name for our tandem. Any suggestions?
I’ll blog about the Tour experience afterward, but in the meantime, why don’t you down some donuts, ride some bikes, and make some wishes come true? Click here to learn more about the Tour de Donut and register. I’ll see you there with a mouthful of glazed goodness a la Homer Simpson.
Three weeks ago, I attended UT Southwestern’s 2010 Rare Neuroimmunologic Disorders symposium in Dallas, Texas. At the time, it seemed like three long days of sitting in ballrooms listening to medical jargon for eight hours a day; my rear end and brain hurt by the end of each session. But somehow, like Rituxan, I knew it was one of those things where I had to suck it up because in the end, it would be good for me.
When we first heard about the symposium, John had said that the more we know, the better we’ll be equipped to deal with the future. So despite the time and efforts and money it took, we showed up, laptops in tow–mine for note-taking, John’s for amusement should he get bored. (And if you know us, both were inevitable.) The symposium was broken into two sections: the Basic Science side (for physicians and researchers) and the Clinical side (for patients and their caregivers). I mostly attended the Clinical portion except for one discussion regarding stem cell therapy done on the Science side by Dr. Richard Burt from Northwestern University.
After the long weekend, every time I was asked, “So how was it?”, I answered honestly: “Good, I guess. I don’t know. It was hard to sit through all that medical talk.” In truth, I was still digesting all the information–and boy, was there a lot to chew on. I’m not going to bore you with everything I learned. But I must say, in retrospect, I’m really thankful I had the chance to go. I met fellow patients with whom I now keep in touch, some whom I will see again at the 2010 NMO Patient Day in November. One such person I met attended the symposium alone. Her name is Brenda, and she approached me just as I was exiting the restroom. Out of the blue, she asked me about my case, my vision loss, my story. We ended up speaking at length, and when I introduced her to John, she thanked him for being such a supportive husband and taking me to this and sitting through it all. When we told her we were newlyweds, she actually started crying.
“I thought I would have to get better before God would give me a husband, but it brings me such joy in knowing that God loves you so much, he gave you one even after all this happened.” She gestured toward my white cane.
It turns out she is a reverend, and now John and I are on her international prayer list. Thanks, Rev. Bren.
And then there were inspiring stories I heard. Like Jim Leuben, the TMA webmaster. He wasn’t able to attend the event, but he was the one who sent out elaborate emails rallying people to get on board and attend the symposium. I learned from other attendees that Jim is a quadriplegic and does all his emailing and coding by blowing Morse code through a straw. How inspiring is that? So next time all you web developers out there complain about having to code something, think of Jim.
In addition to meeting patients–some coming from as far as Sri Lanka–I spoke to doctors (including Dr. Wingerchuck from the Scottsdale Mayo Clinic who saw me three years ago), nurses, and therapists. I even joined the Accelerated Cure Project (which I’ll blog about soon). The lectures, albeit at times tedious, were incredibly informative. Here are some of the highlights:
So while I knew a lot of what was discussed at the symposium (most attending patients are highly informed about their condition), I still learned a lot. So now if I was to be asked what I took away from all this, I can answer, “I’m thinking about switching neurologists.” [Cue dramatic music.] (to be continued)
On Friday, October 8, President Obama signed the 21st Century Communications and Video Accessibility Act which is a step toward equal opportunity for Americans with disabilities. It is fitting for such progress to be made 20 years after the Americans with Disabilities Act was signed in 1990 by President Bush, Sr. While this first bill opened up doors for the millions of Americans with disabilities, the fight for equal opportunity is ongoing. This new 2010 bill is evidence that our legislature is lobbying for those who may not have the capacity to stand up for themselves.
The 21st Century Communications and Video Accessibility Act will expand access to television, the internet, and other telecommunications technologies for disabled Americans. It will update close captioning and video description services as well as improve the dissemination of emergency information in the event of a national crisis.
Before signing the bill, President Obama addressed those attending the momentous occasion in the East Room of the White House. Visitors included Stevie Wonder among other key advocates–senators and civilian supporters alike–of the Act. (Go here to read the President’s remarks in their entirety.)
“[The signing of the ADA in 1990] was a moment for every American to reflect not just on one of the most comprehensive civil rights bills in our history, but what that bill meant to so many people. It was a victory won by countless Americans who refused to accept the world as it is, and against great odds, waged quiet struggles and grassroots crusades until finally change was won.
“The story of the disability rights movement is enriched because it’s intertwined with the story of America’s progress. Americans with disabilities are Americans first and foremost, and like all Americans are entitled to not only full participation in our society, but also full opportunity in our society.
“So we’ve come a long way. But even today, after all the progress that we’ve made, too many Americans with disabilities are still measured by what folks think they can’t do, instead of what we know they can do.
“The fight for progress isn’t about sympathy, by the way — it’s about opportunity. And that’s why all of us share a responsibility to keep building on the work of those who came before us — one life, one law, one step at a time.
“The 21st Century Communications and Video Accessibility Act will make it easier for people who are deaf, blind or live with a visual impairment to do what many of us take for granted — from navigating a TV or DVD menu to sending an email on a smart phone. It sets new standards so that Americans with disabilities can take advantage of the technology our economy depends on. And that’s especially important in today’s economy, when every worker needs the necessary skills to compete for the jobs of the future.
“So equal access. Equal opportunity. The freedom to make of our lives what we will. Living up to these principles is an obligation we have as Americans — and to one another. Because, in the end, each of us has a role to play in our economy. Each of us has something to contribute to the American story. And each of us must do our part to continue on this never-ending journey towards building a more perfect union.”
Way to go, Government. Pretty soon, maybe every piece of technology will be equipped with features as awesome as Apple’s VoiceOver. (I still need to blog about the wonders of Apple products for accessibility.)
On an aside, Obama also signed Rosa’s Law–named for a nine-year-old with Down Syndrome–last Tuesday that now requires the replacement of the phrase “mentally retarded” with “intellectually disabled” in all federal health, education, and labor laws, the idea behind it being that (in the words of Rosa’s older brother Nick) “what you call people is how you treat them; if we change the words, maybe it will be the start of a new attitude towards people with disabilities.”
I know I am notorious for my callous political incorrectness, but reading the President’s remarks almost brought tears to my eyes. It’s one of those things that you don’t really think about until it directly affects you. Keep fighting the good fight, People.
On October 15th, Houston will celebrate White Cane Day at Discovery Green (1500 McKinney St.). The march, which is open to both blind and sighted people, will begin at 10 AM sharp at the corner of Main and McKinney. Activities to follow include live music from a band, a DJ (which happens to be my vocational rehabilitation teacher [VRT]/Braille instructor), proclamation, a poetry reading, and community resources exhibits–all of which will either be for or by visually impaired individuals.
White Cane Safety Day was first observed in 1964 after a proclamation by President Lyndon B. Johnson. The purpose of the first Safety Day was to promote courtesy and special consideration for those who are blind. Over the 40+ years, it has evolved into a celebration of the blind’s independence and their right to participate fully in society. As an effective tool for mobility, the white cane symbolizes independence for the blind. Since its inception, White Cane Day has promoted safety and awareness for blind people.
All U.S. states have their own white cane laws which not only address pedestrian safety but, more importantly, guarantee civil rights protection. Texas law also states that people who use guide dogs have equal access to all public places.
While White Cane Days are taking place all over the state since October is National Disability Employment Awareness Month, Houston will hold theirs next Friday. DARS is teaming up with Texas Rehab ACTiion Network (TRAN) to host the second annual event. I didn’t get a chance to attend last year even though I was invited to speak at the event (partly due to a busy schedule, mostly due to stage fight). So this year, I will definitely attend in order to support the cause. If you happen to be nearby, I urge you to come out even if you’re a sighted person. It might be an interesting experience to march blindfolded with a cane like the rest of us.
When I first lost my vision several years ago, I received a package in the mail containing a radio that looked like it came from the ’80s. I plugged it in and turned it on to find that it only tuned in to one station. (I know, doesn’t this sound like some thriller movie where I start communicating with ghosts or aliens through this radio sent randomly to me?) But instead of an inaudible “booooOOOooo,” I heard a man and a woman talking about their kitchen endeavors on a show called “Cooking in the Dark.” It turned out the radio was sent from Taping for the Blind, a non-profit organization in Houston that broadcasts radio shows for blind people. Their shows are found on a specific frequency that could only be heard with their special equipment, hence the odd little radio.
In addition to other blind interest shows like “Blind Like Me” and “Blind Handyman,” there are broadcasts of popular periodicals (e.g. The New Yorker, The Wall Street Journal, Newsweek, People, The Houston Chronicle) and useful things like the weekly grocery ads or the TV Guide. And for those into radio entertainment, there are comedy shows and book hours among others. Even Playboy is read late at night two days a week–I guess they wait till the kids are asleep. (Side note: I actually tuned into this once to see how they would deal with the photos, and the reader actually describes the photos in a very matter-of-fact tone of voice which made me crack up.)
I perused the Taping for the Blind website recently and discovered they’ve begun moving their radio shows online and also into an audio archive. The former lets you wean yourself off the clunky radio, and the latter is equivalent to TiVo but for their radio readings and so is nice when I miss a program. (After all, who sits around and waits to hear The Atlantic at 1 AM on Tuesdays?)
Something else I discovered on their website is their audio description program for live theater. During select plays’ or musicals’ runnings at one of Houston’s renowned theaters, there will be a select show date and time where blind audience members can receive an audio feed via headset. A volunteer attends the show and describes into the audio feed the costumes, sets, and stage directions so the visually impaired viewer will not be utterly lost. When I found out Wicked was in town and there would be a Taping for the Blind volunteer at the July 15th show, I bought tickets right away–I had wanted to “see” this musical for years. And after John helped me figure out how to work the headset (I had gone 30 minutes into the show before realizing my headset wasn’t completely turned on–I was about to complain that the volunteer was lazy and not doing his job), I was able to enjoy the musical and understand the storyline.
The most recent cool thing I discovered about Taping for the Blind is their custom recording service. In the past, when I could not find a book anywhere on audio, I ended up buying the printed version and scanning it page by page with Kurzweil. It took hours to scan one book, but believe it or not, this option beat sending in the book to the publisher and waiting months before receiving an audio version. (Grad school doesn’t allow this luxury of time.) But now with this custom recording service, I can send (or better yet, drop off) the books and get mp3 recordings of the text in as short as one week. They place priority on materials needed for school and will send files as soon as they’re produced so I can start reading as soon as possible.
Apparently, all of the programs described above have been around for years, and Taping for the Blind was conceived in 1967, so I am late to the game. But frankly, I would have never known about this resource had they not initiated the contact by sending me that funny little radio. So in blogging about them, I hope to bring just a little more exposure to such a helpful organization for the sight-impaired. To learn more about them or donate or volunteer, visit their website. Thanks, TftB, for turning sight into sound.
I just returned from my little Braille graduation ceremony at the DARS office in the Heights where there is a Division for Blind Services. Thank you to Joanna for coming and being my one-woman fanfare as I ambled up to the front and received my certificate. Both my Braille teacher, Benigno, and my former counselor, Lori–two people whom I adore–were both there to congratulate me. After the little pomp and circumstance, the three of us took a picture together, and then I unfortunately had to leave before we got to dabble in the hot dogs, Doritos, and other post-ceremonial snacks.
Before the mini-ceremony, we went around the circle and introduced ourselves. There was definitely a camaraderie to be had in telling a potential group of strangers how you lost your vision and why you are learning Braille. Mostly there were people with diabetes or glaucoma, but there was the occasional brain tumor and other rarities. The fact that people were so candid about their problems was refreshing to me–Americans don’t normally say to someone they had just met, “My name is X, and I have so-and-so disorder.” It is often taboo to discuss someone’s health or medical history, and so to be sitting in that circle and telling the ten or so other graduates that I had an autoimmune disease was cathartic. It was a total support group mentality. Half of the graduating group come to the DARS office three times a month for Braille class, and I can see why that option could be more appealing than what I chose to do which is to have my teacher come to my house and do one-on-one lessons. Those that meet weekly seem to have become friends; I even heard some of them talking about going to the clubs to party together. Imagine a bunch of blind people dancing with their canes.
My certificate has Braille printed over it, and because I can read uncontracted Braille now, it says:
Texas Department of Assistive Rehabilitive Services
Division for Blind Services
Certificate of Completion
Is hereby granted to:
To certify that she has completed to satisfaction
Uncontracted Braille Training
Awarded September 21, 2010
Congratulations to me!
In my previous post about Braille, I had just learned the letters X, Y, and Z, which marked the end of the alphabet and consequently, the first grade. As a follow-up, my teacher assigned me two reading passages accompanied by comprehension questions. My first reading assignment was about Al Capone (did you know he died of syphilis?), and the second was about Michelle Obama (did you know her father had MS?). That’s right, and I learned all that in Braille.
At first, it took me over an hour to read a page (which consisted only of two or three paragraphs each). But my reading speed improved with practice, as with most things in life. Eventually, it even became sort of fun. I would read while listening to the television, read while eating, even read in bed at night with all the lights turned out. It felt nice to be able to simply read again.
The other part of the homework, on the other hand, was more difficult. I use a slate and stylus (comparable to paper and pencil) to write my answers and often find myself forgetting where in my sentence I am or accidentally overlapping one line over the other, resulting in a blob of illegible dots.
Regardless, I’ve officially graduated from the first grade and have moved on to the second grade. Now I am learning contracted Braille where certain letters represent entire words, e.g. B is for “but”, C is for “can”, and so on. My teacher said it’s a lot of memorization, but isn’t that Braille in the first place? Contracted Braille is important to learn, though, because that’s the Braille they use in public on restroom doors, etc.
On Tuesday, September 21, there will be a mini-graduation celebration at the Division for Blind Services for those of us who have completed some milestone in our Braille education. It won’t be anything special, but it’ll be nice to meet others who share in some of the same frustrations and rewards that come with learning to read again, this time, through touch and not sight.
“Art is about more than what you can see. The essence of art is the connection that happens between artist and audience.” –from the Art Education for the Blind
Earlier this year, the Museum of Fine Arts (MFAH) housed the Your Bright Future exhibit. The curator of Asian arts was kind enough to offer us a private tour, but I recall still feeling gypped by the experience. So much of museum art is visual, and being blind, I could only “see” what others described to me. It made me ponder the existence of a museum where the sight impaired were allowed to touch the exhibits, feeling the crevices and texture unique to each piece of art. Or how about contemporary art that appeals to all five senses?
Because I am receiving vocational rehabilitative training through DARS for a career in the creative arts, my teacher forwarded along an email to me about the MFAH’s new Art Beyond Sight program which organizes tours for the vision impaired. While the email only stated that art will be described to the blind patrons, after googling “Art Beyond Sight,” I discovered it is a collaborative effort with Art Education for the Blind. AEB’s mission is to make art, art history, and visual culture accessible to the blind and visually impaired. It was founded in 1987 by Elisabeth Axel when her grandmother, an artist and lifelong lover of art, began losing her vision. As they visited museums together, they were dismayed by their lack of accommodations and services for blind and disabled people. “I was appalled,” she said, “that this could happen in New York City with all our wonderful museums, cultural riches, and openness to diversity.” A museum educator, Axel also knew that where there was a will, there would be a way to bring art to blind people, and that learning about, appreciating, and creating art would improve and enrich the lives of blind people as it does for sighted people.
Bridget O’Brien is the Tours Program Manager at the MFAH, and after emailing her here, I was immediately added to their contact list for upcoming Art Beyond Sight tours. The remaining scheduled ABS tours of 2010 are:
This Saturday’s tour will only be the third time the museum has participated in the ABS program, and so they are looking for patrons who can give honest helpful feedback as their learning curve is still steep.
Art Beyond Sight is not just a MFAH thing but a program being put into action all over the nation and world. I am happy that it is a start to resolving my quandary on how as a blind person I could still enjoy visual art along with the rest of society.