I spent last Sunday afternoon enveloped in holiday music. Not your everyday stuff – this was the Marcus Roberts Trio with the Chicago Philharmonic, playing holiday classics arranged by Duke Ellington. A Concerto written by George Gershwin. Holiday Jazz.

I love jazz, I’m especially fond of jazz piano, and ever since I heard an album of Marcus Roberts playing piano at a record store back in the 20th century, I’ve been a fan. I bought the CD and played it constantly. Years passed before a friend kindly pointed out to me that Marcus is blind.

He’s blind? Who knew?! Quirky fact: Without having sight, it’s hard to know if someone else can’t see, either. I liked Marcus Roberts even more now and bought more of his CDs.

About 15 years ago, Marcus Roberts did a weeklong artist-in-residence stint at a nearby college. The public was invited to come and listen and I stalked him at every workshop and performance he gave. Not an easy feat for a blind woman, but well worth the trouble.

Between tunes at the first workshop, Marcus told us what it was like to grow up blind, how he first learned to read Braille music, and the frustrations he faces when traveling to and from gigs.

“When our plane landed this morning, I stood up. The flight attendant brought in a wheelchair.” He paused for a moment. He was looking at us, I could tell. “I was STANDING. You with me?!” he finally continued. “I wonder, do they give white canes to dudes who need wheelchairs?”

I was spellbound. So, it seemed, was the rest of the audience. We all broke out in laughter.

Marcus went on to explain how he communicates to his trio during a performance without being able to see them. Drummer Jason Marsalis demonstrated the cadence he uses to cue a key change. Marcus showed us a pattern he plays on the upper register to cue bass player Roland Garrons for a solo. Afterward, we were encouraged to ask questions. I directed mine to Jason and Roland. “When Marcus approached you to play in his trio, did you hesitate at all?”

No answer.

“I mean, knowing there might be extra work involved, him being blind and all.”

They both stayed quiet for a while. Finally, Jason piped up. “In jazz, when you’re offered a gig, you take it.”

Roland asked to add something to that. He’d played with a lot of musicians over the years, he said, and a lot of them get lazy. “But with Marcus, he’s always coming up with something new. And when you play with Marcus, you really have to listen. I think we’re better for that.”

Amen.

Marcus and I had a chance to talk after a performance later that week. “Have you always talked about your blindness like that?” I asked him.

“Oh, man, no!” he answered. What a voice! “I used to do what so many other blind people do — pretend it doesn’t exist, it’s no bother.”

I nodded my head in agreement. You might think you have to be able to see to know if someone is nodding, but we know. “What made you decide to start talking about it, then?”

“About five or six years ago, I just thought, man, I deal with this every day. I might as well talk about it.”

What a relief it was to hear him talking so candidly about blindness. I’m a writer, and for years I’d been writing a book about losing my sight as an adult. Long Time, No See was in the midst of reviews and editing just then, due out in a couple months. “I’d like to read it,” Marcus said.

I got his address, contacted the college’s disability services office the next day, and they agreed to print a Braille version of the advanced copy. Marcus liked the book so well, he agreed to do a blurb for the cover.

So there you have it. My brush with fame. I haven’t spoken one-on-one with Marcus since then, but trust me. Last Sunday, his performance from that Chicago concert stage of Gershwin’s Concerto in F spoke to me. What a sensational way to start celebrating the holidays this year.

The semester is almost over already! I’m still trying to process the fact that I’m graduating from college in a few days. I got my tickets for the graduation ceremony in November, and now it’s finally starting to really sink in.

I had a really, really rough week early in November. It was one of those weeks where everything that could possibly go wrong did and where the universe just wanted to throw every accessibility issue it could at me just to see how long it’d take before I lose my sanity. The answer: I took a “mental health day.”

I’m not going to say that people with disabilities need more mental health days than those without a disability, but what I will say is this: in my opinion, those of us with disabilities are used to pushing ourselves. We’re told — or at least, I was told — that I’d have to work twice as hard as the average college student, and they weren’t wrong.

We have to push ourselves because sometimes we have to wait to get things done until an accessibility issue is fixed. Tests take longer. Assignments take longer. Some professors aren’t understanding. There are a variety of things that occur in the day-to-day life of a college student with a disability, and it can take its toll. That was the case during that really really rough week I had early last month. I’d planned to catch up with everything by having a productive couple of days the following weekend, but by the time that weekend came around I was exhausted. That rough week sucked every ounce of energy I had. I desperately needed to recharge.

Mental health day to the rescue! I started the day at Dunkin with my best friend Jenny, and after a medium hot coffee, Jenny and I came back to my dorm room to watch Atypical on Netflix.

If you haven’t heard of the show, Sam Gardner, the main character on Atypical, is on the autism spectrum. Keri Gilchrist (the actor playing Sam) does not have autism, and I think he does a fantastic job. It’s a fictional show, and it’s nice to see autism portrayed in a realistic and thoughtful way, and I think it’s so cool that a popular show like this features a main character who has a disability. Watching it with a friend and sharing our thoughts, opinions, and impressions while the show was going on brought the enjoyment to another level.

And guess what? The mental health day worked! The next morning I was up and getting ready for the day by 5:30 a.m., and by noon I had already gotten a lot of studying in.

My mental health day taught me a very valuable lesson. It made me realize that I really need to make myself more of a priority. We all do. Productivity is nice, but we can’t be productive unless we take care of ourselves first.

Credit: Elisha Knight

Happy Thanksgiving, 2019! It can be too easy to get down in the dumps this time of year. There’s so much going on, so much to do, troubles in the world, troubles on the news, flight delays, stressful family get-togethers, you name it. I was about to crawl down that dark hole but stopped at the edge to think twice. I have a lot to be thankful for. Easterseals is providing this short work week in our calendar and encouraging us to take time to catch up with family and friends during the holiday, and I am very grateful for that. I am also grateful for the many years I’ve had the privilege of moderating the Easterseals blog, and especially grateful to all of you who continue to subscribe, read, comment and share our posts.

In honor of all that goodness, today I am linking to previously-published posts of thanks. We’ve published many, many posts expressing gratitude since our blog started a dozen-plus years ago, but these seven came to mind right away. So here they are, in no particular order:

1. 1. Steve Jobs for emphasizing technology for “the rest of us” and making the iPhone so accessible for people with disabilities
   2. George H. W Bush for signing the Americans with Disabilities Act into law
   3. Members of the U.S. military, veterans, and their families for their continued service
   4. My Seeing Eye dog and service dog instructors who train them for people with disabilities
   5. Companies that offer free or reduced rides to polling places for people with disabilities
   6. Caregivers who provide care to the millions of Americans who need them
   7. Little kids who ask such great questions about disability during my visits to their elementary school classrooms.

And those are just the first seven that came to mind! Consider coming up with your own seven things to be grateful for: you’ll end up with even more to celebrate this weekend. Happy Thanksgiving!

A little shout-out to my alma mater, University of Illinois. Yesterday morning my Seeing Eye dog Whitney and I took a train from Chicago to Champaign to give a guest lecture there, and on the way down I took time to check out a new website I’d heard about on Illinois Public Media a few weeks ago. Here’s the deal: undergraduate and graduate students studying special education at the University of Illinois at Urbana-Champaign have put together a website ranking local businesses on how accessible they are to people with disabilities.

Plenty of restaurants claim they are accessible, but what does that mean, exactly?? This new Access Urbana-Champaign website spells it all out. Every one of the 100-plus local restaurants, cafes, and bakeries featured on the site are rated based on a 25-point survey, and the answers are posted right there on the site for all to see. Or in my case, hear.

Once I was done giving my guest lecture yesterday afternoon, I’d arranged to meet a friend at a place near the train station called Esquire Lounge. I went ahead and checked how well it ranked, and…wow! Excellent. I mean, that’s what it ranked: excellent! Just to give you a better idea how the Access Urbana-Champaign site works, here’s an example of what I found there — about the questions the students asked on their survey, and the answers they came up with about Esquire Lounge:

Accesibility Survey Details

Is there at least one designated accessible parking space in restaurant’s private lot?

N/A

If no, is there at least one public accessible parking space within 1 block?

Yes

Is this restaurant located on or near a public bus route?

Yes

Is the entrance to the restaurant accessed by level ground?

Yes

If not, is the entrance to the restaurant accessed by a low-incline ramp 36 inches wide?

N/A

Is the entrance threshold less than 3/4 inches tall?

N/A

Is the doorway clearance at least 32 inches wide?

Yes

Can the entrance door be opened with limited grasp?

Yes

Are there aisles and pathways between chairs or tables that are 36 inches wide?

Yes

Are all of the condiments accessible on counters that are within 36 inches in height and within arm length of 25 inches from edge?

Yes

Do any of the tables offer 27 inches (from the ground) for knee space?

Yes

Is a menu offered in Braille or large print?

No

Does the restaurant welcome people with disabilities with service animals as required by ADA?

Yes

Do all fire and emergency alarms in public areas have both audible and visual signals?

Yes

Is there signage to indicate accessible restrooms?

Yes

Can the restroom door be opened with minimal force / limited grasp?

Yes

Does the doorway leading to the restroom(s) have at least 32 inches of clearance space?

Yes

Is the aisle-way leading up to the accessible stall at least 42 inches wide?

Yes

Does the accessible stall door have at least 32 inches of clearance space?

Yes

Is the toilet seat 17 inches to 19 inches above the floor?

Yes

Are there grab bars behind and on the side wall nearest the toilet?

Yes

Measured length the interior of the stall space.

96″

Measured width the interior of the stall space.

60″

Is the counter with wash basin no higher than 34 inches from the floor?

Yes

Is there 27 inches of knee clearance under the sink?

Yes

Are soap and other dispensers no higher than 48 inches from the floor [at the point where the product is dispensed]

Yes

Can faucets be operated with a closed fist?

Yes

 

If they had a question like, “Are all these accessibility efforts a turn-off to your patrons?” the answer would be a resounding “no!”

We were there before 7 p.m. on a Tuesday, which is not exactly a party time, and the place was full of customers of all ages and all sorts. Before we left, my friend and I checked out the public restroom. Whitney guided me to the larger accessible stall and…thumbs up! Before I left to catch my train back to Chicago, I made a point to compliment the manager, and he said he was proud of their high ranking. Pretty cool.

A Veteran’s Day story on NPR about service dogs and veterans caught my attention this morning. The story was only three minutes long, and the title made the issue sound black and white: “Advocates Say VA Is Taking Too Long To Assign Service Dogs To Vets.”

But like so many things, the story is not that simple.

I am blind, I live in Chicago, and I use a service dog to get around the city safely. My current Seeing Eye dog Whitney is ten years old now and has lost her fervor – and her ability – for guiding me safely through an urban environment. She is retiring soon, and the Seeing Eye School has been evaluating its string of dogs for months now to determine if one is an ideal match for my needs. When they find a good match for me I will travel to their school in New Jersey and spend three weeks with my new dog and experienced trainers there before heading back home. But these things take time. I’d been schedule to attend the December class, but when they determined they didn’t have the right match for me, I was rescheduled for the January 2020 class.

All to say, training a dog to help a person with a disability, and then making a perfect match between the two of them doesn’t happen in a day. Rushing the process would be unfair to the human being, and, especially, to the dog. Service dogs have a lot of responsibility – it’s not an easy job – and is nothing to rush into.

And then there’s the question as to whether dogs who help people with mental health issues are pets, or service dogs. Today’s NPR story referred to a study at Purdue University that found that in addition to the physical tasks service dogs – more specifically, mobility and medical alert service dogs – do for their human partners, they can also provide help with low self-esteem, build confidence, decrease social isolation, and increase the feelings of independence in their human partner. I can certainly vouch for that: traveling with Whitney, havoing her lead me directly to elevator buttons rather than feeling around for them, gliding through doorways without my shoulder running into a doorframe, knowing she’ll stop at stairways and curbs so I don’t stumble…it all leaves me with a sense of dignity. People who see us admire us, and I no longer feel a sense of pity from strangers. But while the V.A. covers the costs of training and ongoing care of service dogs for veterans with certain physical disabilities, like blindness or vision impairment, it does not cover costs for dogs assisting veterans with mental health issues. Why not? Not enough clinical evidence to prove the benefits dogs can give in treating mental health issues.

Today’s NPR story failed to give the reasons behind the VA’s decision on this, but in a longer NPR piece on this in 2017, they interviewed Dr. Michael Fallon, the V.A.’s chief veterinarian on the subject. “I would say there are a lot of heartwarming stories that service dogs help, but scientific basis for that claim is lacking,” he said. “The V.A. is based on evidence-based medicine. We want people to use therapy that has proven value.” A story in the February 14, 2019 issue of Purdue University News reports researchers there are leading studies regarding how psychiatric service dogs may help veterans with PTSD, and how research has revealed how service dogs might offer both psychosocial and physiological benefits to veterans. Right now the research group is conducting a clinical trial studying veterans with and without service dogs over an extended period of time.

Just wanted to get all this down in a post to help our blog readers understand this issue is a bit more complicated than it looks sometimes, and the barrage of people bringing pets into public places and claiming them as service dogs complicates it further. I’ll say goodbye here and leave you with information about an ongoing VA study about service dogs reported in a New York Times story this past summer:

The V.A. is currently conducting research into the effectiveness of service dogs, but the process has been slow. Research started in 2011 was supposed to wrap up in 2015 but has repeatedly been stalled by problems with the study’s design and execution. In May, the V.A. said the findings of the study, which has cost $16 million to date, would be released to the public in 2020.