Reid My Mind

Today, January 27 is a day of celebration!

Eight years ago today, I had surgery to remove a tumor behind my right eye knowing the chances were extremely high that the eye would need to be removed and I would be left totally blind , changing my life forever

And yes, I am celebrating!

Celebrating Life

At the time of the surgery, there was so much in my life worth celebrating. Well the simple truth is those things are still here with me eight years later.

Family, friends, health and opportunity.

Celebrating Loss

Really, it’s more the opportunity and lessons that come with loss and not the loss itself.

I have the opportunity to;

• Work with really smart people
• Make a difference in the lives of folks I was never on a path to even meet
• Develop skills I really didn’t know I even possessed
• Develop my “Can Do” muscle

If that’s not enough, I truly feel more good things are on the horizon. More ways to be involved and make a contribution to things bigger than myself.

If all that’s not worth celebrating, well then just join me in celebrating Friday!!

Wow, as I write this playing in the background on the Pandora Classic Soul station is “Be Thankful” by William DeVaughn.

Can that be more appropriate?

“Though you may not drive a great big Cadillac
Gangsta whitewalls
TV antennas in the back
You may not have a car at all
But remember brothers and sisters
You can still stand tall

Just be thankful for what you’ve got…”

Peace!

Saying goodbye is never easy, especially not to her. She was there for the birth of my two children, through various family trials and some really wonderful times. Never once letting me down when I needed her. She was both my first and probably my last.

My 1997 Nissan Sentra!

My First

Living and working in the city, there really wasn’t much need for me to buy a car. That all ended when I found out my wife was expecting our first child.

As her due date approached we began looking at cars. I toyed with the idea of a truck or van, but we were still a small family. About a month before my first child came into this world I purchased my black Sentra.

She was never considered luxurious, fancy or popular, but I didn’t care, she was mine.

When I would take her to my car wash spot on Sunday’s in the summer to get her clean and shiny, some of the brothers would look down on me. That’s not just metaphorical. They were sitting in their Escalades, Denali’s or Suburban’s on 20 inch rims while I jumped out of my little Sentra. I bumped my stereo as much as it would without bursting the tweeters. Sticking my chest out a little further proud of the fact that this car was mine and I was quite comfortably making the payments.

My Last

She was the last car I would drive. November 16, 2003, two days before the birth of my second daughter. She too would come home in the Sentra, although not driven by me. By that time I did not trust my steadily diminishing vision to safely navigate the family back to Pennsylvania from the Bronx.

Saying Goodbye

The time finally arrived when I would have to say goodbye. And I couldn’t. I was sick! No, literally, I was coughing, chills, congestion and all of the other nasty side effects of a cold or flu.

That night after my wife returned home without the Sentra, I began thinking of the little four door car in the lot, by herself outside. She’s a garage car; she’s not used to the elements. It’s raining, and cold, how will she cope. “Did you say goodbye?” I asked my wife. “No!” She muttered. Probably thinking about her shiny new crossover vehicle now comfortably parked where the Sentra has been for the past 8 years.

Maybe she’s thinking of the fancy steering wheel controls, satellite radio with their drug dealer business model (first 3 are free, then you’re hooked) or maybe all that additional room and comfort. “You know we’ll all have a cup holder now!” she gleefully cries out.

I say nothing as I recall the time I finished cleaning the Sentra and armor oiling the wheels and a black Mercedes sedan pulled up next to me. I honestly thought someone could easily confuse the two. And save the jokes about this being the first sign I was losing my sight.

Remember, beauty is in the eye of the beholder. The Sentra came into my life at the right time. It safely carried my precious family to all of our destinations. Never once leaving us stranded.

Now that she’s gone it is like closing a chapter of my life. As we know, with change comes opportunity. The lines on the new pages will be filled with new exciting experiences for the Reid family.

I’m past the pain that comes with losing the ability to drive. I’m done equating driving to my masculinity. Besides, a car is an inanimate object, right?

I’m on to focusing on the pleasures of being a passenger. And yes there are plenty;

• Sleep – some of my best sleep comes cruising down the highway.
• Co-pilot – when necessary, I have the gift of gab. I may not be able to read a sign or provide the exit number, but I will keep my pilot awake and entertained when required
• Mobile Office – I can open my laptop and actually work as we travel.

So there it is, saying goodbye to the Sentra for me was at first saying goodbye to the freedom I once equated to driving, officially turning the keys over to my wife and all that comes with the role of pilot.

The final lesson, while not solely born out of trading in a car, but rather a lot of introspection and work, is an awareness that although no longer behind the wheel, I still steer!

Dear Business America:

I am sure you are quite busy right now with many tasks like managing sales, distributing purchased items and ultimately maximizing profits for your company. However, I’d like to interrupt you for one moment to offer a suggestion as I make you aware of additional profit that would have made it into your account, but instead will probably find its way to a select few companies who offer something you are lacking; accessibility, and or a user friendly experience for those of us who use screen readers.

In my home and many across the globe during this holiday season, family members are requesting and supplying gift wish lists. While many people in society can debate whether the requests or the fulfillment of such an appeal captures the spirit of the season, it’s hard to argue with the effectiveness of the lists.

For many years now, my wife and I have exchanged lists. Being the very beautiful and detail oriented person she is, my wife’s lists include not only the name of the item and store, but ever since online shopping has become more of a necessity than luxury for me and millions of people with vision loss across the nation, she has kindly included links to what could be your business.

While my wife is aware that I use a screen reader, she knows of accessibility and usability issues, I don’t think this should be her main concern as she browses the internet looking for a new fragrance of perfume, stylish handbag or some other potential present from her loving husband and children. While I could restrict her gifts to a few known sites that meet web standards and therefore produce a comparable shopping experience to my sighted peers, that seems a bit too harsh and restrictive even for me!

This shopping process, while no fault of my wife’s, is like a game of reverse Russian roulette, where the chamber contains 5 rounds. The missing round in this case equates to a positive user experience.

Every year, I wait in anticipation for her list, hoping to see a familiar web site. Each year I dread selecting the link only to be greeted by unlabeled graphics, pages filled with Flash objects lacking any labels or functions that I can’t reach without using a mouse.

The game continues, I move on to the next round pulling the trigger.

POW, gun smoke! Bam I’m hit!

Sometimes, I hear click. I perk up, I can’t believe it. Wait, this site may work. I begin the process waiting for something to drop. No it can’t be, I can successfully place the items in the shopping cart, navigate to the checkout, and supply my credit card info?

So Business America, do you see the lost opportunity for additional revenue. I am absolutely sure many of my peers who use screen readers and other access technology share in my experience. If you factor in birthdays, other holidays and general consumerism, the loss to your bottom line is even more significant.

Sincerely,

A consumer who just happens to be blind.

Maybe you’re thinking of the three wise men or Joseph and Mary’s search for shelter, eventually settling on a manger, but this is not that story.

I’m referring to my families first Christmas 8 years ago in our new home in the Poconos. Our first as a family of four rather than three and my first as a man who is blind, although not yet officially.

Experiencing a loss during the holiday season makes even future celebrations feel like work. For the Reid family the work begins in November. My father passed away the Sunday before Thanksgiving 1996, being buried only the day before the festivities. We understood my mother’s emotional roller coaster during many Thanksgivings to follow, although it was still very difficult to manage.

On the morning of December 25, 2003, I remember awakening with a patch on my eye. This was the result of the Christmas Eve biopsy performed to determine the magnitude of the aggressive tumor behind the right eye.

Truly it was a bitter sweet, surreal moment. We were raising two beautiful children, one of which was only a month old, in our newly built house where just a few weeks prior we had so much hope for the future. While there was so much to celebrate, there was so much uncertainty for what the future would hold for our family.

My fate was not yet sealed, family and friends were hoping and praying for a full recovery and return to normalcy. My little girl wanted her Daddy to see her again. My wife wanted the same and more – relief from the insecurity of not knowing if everything we have been building would soon come crashing down.

And me, honestly, I just didn’t feel like dying.

That first Christmas was difficult, but not as challenging as what would follow. We got through it.

Now that Black Friday is over, the tree in Rockefeller Center is lit and Rudolph the Red Nose Reindeer cartoon premiered on television, its official, the holiday is here.

Every year when it comes time to put up the Christmas tree in the Reid house, we have a tradition. Well by we I mean me. My wife instructs me to retrieve the tree from the garage, yes we use a fake tree, don’t judge me city habits are hard to break. She then complains that I do not help decorate the tree. I insist that my role is to either capture the moment, formerly with video now occasionally using audio. The tradition continues where my daughters promise to take on more of the decorating tasks, but usually end up playing or watching television. My wife then completes the tree raising and complains that every year it’s the same thing. Ahhh, Christmas, I love it!

This year I would like to change a few things, not the tree trimming, that’s a tradition after all. I’d like to get all of my shopping completed by December 10. This would alleviate added stress. I’d like to figure out a way to manage the tension that comes with, well you know, family. I have a few spirited ideas, but they can produce other issues. I use to have the one solid go to relief, get in the car and go somewhere under the pretext that I was doing a household chore. “We need more, uh raisins”, I’ll go get them I’d say and grab the car keys. Back then we lived across the street from a supermarket, but I would stress that the other supermarket further away had a sale on raisins.

Obviously this is no longer an option, so I am forced to deal with things like a man. That’s right…,

Man Cave, here I come!

Happy Holidays!

Today is my little girl’s 8^th birthday!

Every year around this time I think back to when she was born. This was during the same time I was noticing a big change in my vision. In fact, driving my wife to NYC to give birth to our daughter would be the last time I would drive a car.

I’m sure at first glance, these memories may seem quite sad. However, when I received my cancer diagnosis only a few weeks after Raven’s birth and my choices were between blindness and life, well it makes these celebrations even better!

Thanks to the use of a digital audio recorder, I found ways to capture the special moments I once believed I wouldn’t get the chance to enjoy!

I thought on this special day, I would share them with you. Take a listen to a mix of some Daddy Daughter moments with Raven and I.

I’m so fortunate and blessed to be around to enjoy these and hopefully many more to come!

Today is Halloween. Not really a favorite of mine, but I do enjoy candy!

While many enjoy dressing up and acting out a role, I started thinking about the various roles I would love to really act out. Not just dressing up like that person or role, but actually living out the fantasy

Here’s my top 7, at least those I can share!

7. Background Singer in a Salsa or Merengue Band!

I know this may seem as though I should aim higher, but seriously, if you ever watched a good Salsa Band, the background brothers are so freakin’ cool! The got the moves, microphone technique and usually the best part of the song, the hook.

6. Guitar soloist

I’m not a heavy metal dude, but I love a good rock/funk guitar solo. The one that stands out in my mind is The Isley Brother’s “Who’s that lady?” Oh my, I truly rip that solo with my custom made Fender air guitar! I like to start off in the back, just playing that guitar riff and then as my solo approaches, I make my way to the front of the stage and that’s it, the crowd goes nuts.

5. Third basemen New York Yankees

Growing up watching Greg Nettles while I too played third base, I wanted to rob a hitter of a double down the third base line.

picture it, I’m crouching in my ready position when a shot explodes off the bat and bullets down the third base line. I dive and in one graceful motion I catch the ball and from my knees I gun it to the first basemen throwing the runner out. my knees Son, my knees! Now That’s an arm!

4. Kung Fu Artist

My home town was destroyed by the ruling class, set on taking revenge and rebuilding my community, I study with the Shaolin Monks. I master all aspects of the training including the various animal fighting styles, iron fist and the philosophical lessons minus the one about revenge not being a good thing. I travel back to my town where I meet up with my old crew. We plan our attack and take our community back. I kick major bootie in the process!

3. Announcer introducing Stevie Wonder in Concert at MSG

I could say, I’d like a chance to be Stevie and rock the crowd at Madison Square garden. I’m not worthy!

Ever since attending my first Stevie concert in Radio City Music Hall while in high school, I thought it would be a highlight of my life if I could be the person to come out on stage and get the crowd hyped up. Not by performing, but rather by talking about Stevie. I always looked at that role as both getting the audience hype and the artist as well.

The house lights dim, and I make my way out on stage. “New York City, how you feel?” “Manhattan, Queens, Brooklyn, the Bronx are you with me?” The crowd starts going berserk. I talk a bit about a few of my favorite Stevie songs…

The music starts,…”Ladies and gentlemen, brothers and sisters, here he is STEVIEEEEEEEE WONDERRRRRRRRR!!!

2. Drummer or Percussionist

I’ve been a huge fan of the drums ever since I was a little boy and I broke my kick drum. A little too much kick. My parents never replaced it; I truly think I would be playing in a band if they did. I grew up watching my cousin play Congas. In elementary school any opportunity to play percussion in a school performance was mine all mine. Little drummer boy, I killed that! High school beats on the lunch room table, I’m a freakin’ legend. Listen to anything by the JB’s, Ohio Players, Parliament… that should’ve been me. Latin, African rhythms that’s me. The drum rules!

1. Lead Singer, Funk or R&B Band
   

Okay, who hasn’t taken a hair brush, comb, or some object substituting for a microphone and perform your favorite song for thousands of imaginary people.

In my scenario, I’m called on stage and given the opportunity

To jam with The Roots. I tell them I want to do “Higher ground” by Stevie Wonder.

The guitar starts it off. At first I seem a little reserved, but by the time the chorus kicks in I’m running around the stage like a wild man totally rocking out. I climb on top of the speakers, jump down into a half split, (I guess it’s a fantasy so I should say full split huh? That’s just crazy talk! The crowd goes insane and we get double encores. We go down in history for one of the best performances of all time.)

Now that’s a Happy Halloween!

The 2011 PCB State Convention & Conference theme was “Embracing Change”. Throughout the weekend we had the chance to see this in action.

A new administration was voted in which included President, Tony Swartz, yours truly as PCB First Vice President and Second Vice President Sue Lichtenfels.

The organization is going through several other changes and we definitely have our work cut out for us. I’m really looking forward to this opportunity to help grow the organization. It’s not that often in life that we have a chance to impact both individuals and an organizations direction and future.

As I discussed here several years ago, my first convention was a great learning experience filled with information and emotion.

It was the first time on a large scale being around others with varying degrees of vision loss. Interacting with people with multiple disabilities who were living active independent lifestyles. Meeting men and women who committed themselves to advocating for those with vision loss.

Following my first convention, I had the opportunity to work on the Planning Committee and help develop and implement the convention program.

Although I served in various roles throughout the years, this year bloomed new experiences

As Co-Chair of this year’s committee, I had a new level of responsibility. This year I added several new duties to the list including assuring the meeting stayed on schedule, all dealings with the hotel management and in general making sure the convention was a success.

I was also very fortunate to be able to help acclimate a new MCCB member and help assure she was able to get the most out of the experience.

Unfortunately, I have seen individuals attend a convention and never really get the full set of understandings and lessons available. They choose to only participate in the social aspects, for example, and then later question why they didn’t know about a particular issue or a new piece of helpful technology.

The social opportunities are great too. I enjoyed some fun times hanging out with other members in the hotel bar. You get to see an inside into their personality that you may have never seen before.

The weekend was long and exhausting. It was just Perfect!

Beginning on October 19, 2011, members of the Pennsylvania Council of the Blind met for the Seminar on Advocacy Legislation & Leadership (SOALL- pronounced soul).

The objective of this seminar is to help members of PCB become more effective advocates. In order to help meet this objective PCB planned a full day of training on the 19^th. This included presentations on topics such as understanding the very complicated governmental structure of Pennsylvania, effective methods of advocacy and how to best communicate issues to legislators.

Helping PCB explore these topics are representatives of the League of Women Voters, the Disability Advocacy Support Hub (DASH). And Representative Scott Boyd of Lancaster.

Following the workshops on Wednesday, PCB statewide members will meet with our State Representatives and Senators to discuss the organization’s position on three specific issues.

These include:

House Bill H.B. 165- This bill looks to strengthen the penalties for attacks on service animals. Over the past decade many users of guide dogs have reported an increase in attacks to their dogs from other out of control dogs.

What many do not understand is the expense both in time and money that goes into training a dog to act as a guide. In many cases after a guide dog is attacked even if not injured, the dog is no longer able to perform their duties.

Additionally this can greatly impact the guide dog user’s fear level and reduce his or her independence.

Support for maintaining the Bureau of Blindness and Visual Services – In times of budget cuts, several states have allowed blindness service agencies to be absorbed into agencies providing services for other disabilities.

Services provided by blindness agencies are very specific.

Therefore PCB would like to assure that any future consolidation efforts do not include BBVS.

Public transportation is a very important service for people who are blind or visually impaired. It is often the key providing access to employment, community involvement and in general independence.

Increased and dedicated funding to improve public transportation will greatly impact the blind and visually impaired community.

Whether in urban or rural environments, PCB supports the increase of funds to improve and further expand mass transit.

All in attendance had the opportunity to absorb both general information that will help produce better advocates as well as specific details to help disseminate our issues on the Hill.

Congratulations to former MCCB member Mary Ann Alexander for leading a very successful seminar!

With such technological progress, why does gaining access to documentation in a readable format require so much change?

Background:

When individuals are experiencing vision loss, there are specific state and sometimes privately sponsored services in which they are eligible to receive. These include Vision Rehabilitation and O&M or orientation and mobility. The first provides a person with training in specific techniques to aid in daily living skills, including rearranging their home, accomplishing everyday tasks like cooking and even methods for on the job organizing. O&M training instructs a person to use a white cane and other techniques to aid in travel.

People seeking these services are usually assigned a counselor who is responsible for determining and administrating the services required. As these are government sponsored services, you can imagine that there is paper work associated with the process. Whether opening a case, scheduling meetings with the various specialist’s or requesting information, some form of correspondence is required.

One thing shared by all clients of the agency is vision loss and therefore the inability to read standard print.

For years, advocates have been asking for all correspondence to be produced and distributed in an accessible format specific to the client – enabling independent access for all. This has become known as the requesting of alternative formats.

Alternative as defined in the Merriam-Webster Dictionary:

Different from the usual or conventional: as a: existing or functioning outside the established cultural, social, or economic system <an alternative newspaper>

As I mentioned earlier the majority of client’s being served by the blindness agencies share in their inability to access print. It seems to me therefore the “normal” in the system of an agency serving people with vision loss, would be a choice of Braille, large print, accessible digital formats, audio and sometimes text.

There’s no reason that an agency specializing in vision loss should consider this an accommodation or an alternative.

One of the things that make attending a conference hosted by a blindness advocacy organization so great is the access to information in a format easily accessible. For most sitting down in a restaurant and being offered a Braille or large print menu or receiving accessible documents electronically prior to the event are not everyday occurrences.

Blindness agencies, with which I personally have had positive experiences, can greatly benefit from a language modification. Let’s stop talking about alternative formats and replace with accessible.

I’ve written on a variety of access issues; software, cell phones and transportation are just a few. Hopefully not all of the issues I presented appeared to be a lost cause. It’s important to discuss in order to increase awareness.

I’ve been thinking a lot about access lately, mainly related to an upcoming presentation at this year’s Pennsylvania Council of the Blind’s 75^th Annual Conference, in Pittsburgh.

My presentation is on new interfaces, not necessarily from a technical perspective, but rather the implications these changes have on our lives as blind people and how we can advocate for inclusion.

While preparing for my presentation, which included researching how we may interact with technology in years to come, it’s easy to understand how someone can have a negative outlook on the future of accessibility. Many current technology and research projects taking place today are not including the blind community.

I choose to remain optimistic about the future. Maintaining this outlook will probably take more work than a pessimist. So much of what we read and hear on news programs concentrate on the negative. Being turned down or ignored by organizations when requesting access can really deter.

However, there are some recent developments that make the challenge of an optimist a bit easier. Probably the most discussed in the news lately is the signing of the 21st Century Communications and Video Accessibility Act.

In summary, the legislation that was recently signed by President Obama will be the beginning of the next level of access for people with disabilities. This includes closed captioning for the deaf and Video Description for the blind. Even more than the various access requirements, I’m hopeful that an added benefit of corporations and others including disability concerns will change the way we think about living with disabilities.

Assuring access to technology, transportation, employment improves the lives of people with vision loss, as well as the entire society.

Going forward, I hope to feature other stories that shine a bright light on a positive future of accessibility.