Reid My Mind Radio – Who is Girl Gone Blind

November 30th, 2016  / Author: T.Reid

This episode features the latest Gatewave Radio piece answering the question; Who is the Girl Gone Blind?
Immediately following the piece, check out what happens when I run with a bit of inspiration from something I heard in my conversation with Maria Johnson, aka, A Girl gone Blind.

Picture of Maria Johnson

If you haven’t yet, make sure you Subscribe to RMM Radio bit.ly/RMMRadioSubscribe
– In the meantime, hit the Play button below!

 

Resources:

 

*Girl Gone Blind
*Girl Gone Blind on Twitter
*Leber’s Hereditary Optic Neuropathy

 

Transcript

TReid:
What’s good everybody, it’s me T to the R E I D!

I’m feeling good today and that’s by choice not by circumstance… let that marinate.
And in this latest episode of Reid My Mind Radio I’m featuring a piece I did for Gatewave Radio…

Check this out!

[RMMRadio Intro]

TReid:
Going blind is a real challenge.
Different for anyone who goes through the experience. It involves adjustments for almost every aspect of a person’s life.
Education, Employment mobility and independence.

Today you will meet someone sharing some of her experiences online, on the internet via her blog.

 

TReid:
Girl Gone Blind, is Maria’s space on the internet, her blog where she’s been sharing experiences, observations and information about her life as a, well, girl who has gone blind.

Her story begins in April 2013.

MJ:
I was working as a fitness instructor. I was working at three different locations and I was also running my own Boot Camp as well as doing the mom things – running around taking my kids everywhere you know volunteering and all that stuff. And I noticed there was a blurry spot in one of my eyes but I didn’t really think too much about it cause I was busy and After a month or two it really wasn’t going away.

TReid:
TReid
With no changes in her vision, she sought an answer.
Multiple optometrist, ophthalmologists ; all trying different tests…
MJ:
… many scans, MRI’s spinal taps, steroid treatments, they could not figure out what was wrong. I was completely healthy except there was a problem with my optic nerve.
>

TReid: Finally, she found a neuro Ophthalmologist who tested her DNA. In September 2013 Maria was diagnosed with LHON.

MJ:
Leber’s Hereditary Optic Neuropathy. It is a mitochondria mutation that is passed down from the mother’s side. When the mutation is triggered you start to lose central vision. It can spread into the peripheral a bit, but most of the time your peripheral is saved.

Treid:
Within a month of receiving the diagnosis, Maria was legally blind.
Her response?!

MJ:
Ok, Now what?

TReid in conversation with Maria:
So you started experiencing vision loss and then you decide three months later you know what, I’m going to do this in public! [Laughter from both]

MJ:
Yeah, I know right!

TReid in conversation with Maria:
What made you do that?

MJ:
I thought about righting a blog previously as a health and fitness Guru if you will, but I never did. And so I always had that little bug in me I think.
When my vision loss came to a point where I had to deal with it, I thought you know maybe I should write about this?
Come January I basically wrote about what I’ve been going through and what actually was going on with my vision and what it was called.
I remember clicking publish and thinking uh [exhale] my gosh I hope, I hope somebody reads this. Well I got the hugest response. Positive response on this blog and people loved it!
They loved it and they were appreciative of my vulnerability and my openness to share what had been going on with me over almost the last year. I got the bug right then and there and said you know what I’m going to keep going with this because people like it.

TReid:
There’s no one size fits all plan for adjusting to blindness.
Chances are if a person is losing their vision and seeks assistance, they will learn of the vision rehabilitation system. For those fortunate enough to receive services, it would include personalized training to aid that person to remain as independent as possible.
That can mean getting back to work or school, learning how to perform all of the tasks they once did like cooking, traveling using a computer and more.
Maria figured out what she needed to go through the process.

MJ:
I realized I needed to get my head wrapped around this whole “I’m now blind” thing!
Before I could even attempt to figure out how I was going to you know cook or you know knit or [giggles] all the other things they wanted to teach me.
I thought I need to get my head wrapped around this. I actually need therapy, and I need counseling.

TReid:
Counseling to help work through the barrage of both feelings and thoughts about the loss not only of her sight, but all that comes with that;
her independence, her perception of herself, trying to figure out what it means to be blind.
Loss, is painful!

MJ:
I would lay on my bed you know crying and crying and crying and think [uh, gasp] how am I going to be a good blind parent?
How am I going to be the mom that I was.
How am I going to be the mom that I expect myself to be?

[Soft sad piano music]

MJ:
I honestly was planning on how I was going to exit this world.
And when I would do it.

MJ:
I thought, but you know I can’t leave my kids.

MJ: So I actually did therapy and group therapy weekly for about a year and a half. It helped me to know that all of my thoughts and feelings were totally normal. The things I was doing to propel myself forward everyday were the right things.
I will rank therapy as the number one thing that has helped me adjust to this new life.

TReid:
In addition to the emotional, Maria was trained in orientation and mobility.

I assumed Maria was proficient with technology and probably received training in either magnification or screen reading software.
So I had to ask about something I read on one blog post.

TReid in conversation with Maria:
You use dictation. Is that still your choice of input?

MJ:
It is, it is, it is.

TReid in conversation with Maria:
Do you do any keyboarding?

MJ:
Ok, here’s the back story on all of that!
alright, so I was always a pretty good typist when I was sighted.
Then I’m telling you Thomas, when I lost my vision and I could not see my keyboard any more….

[Fades out and Narration over MJ…]
>
TReid:
I am a big proponent of technology for all. Especially people with disabilities.
In some sense I’m an Access Technology evangelist…
I’ll tell anyone who will listen about the benefits it affords to people with vision loss or other disability.
I’m also a strong believer in the need to be proficient enough with a keyboard if physically possible
in order to have maximum control over your technology.

I did give Maria a bit of a hard time about her reliance on dictation.
But I’m not judging her!

Judgement, that’s one of the things that’s scary about
sharing personal stories.

TReid in conversation with Maria:
Have you regretted anything you published?

MJ:
I’ve made it a real point to keep it to just my own experiences. What I’ve been through. The good the bad and the ugly and the and the crazy , the funny, but then you know there’s nothing to regret.

TReid:
So is keeping an online journal helpful to the adjustment process?

MJ:
I think where it helped me is I was able to put my emotions and my story out there and I knew inside that maybe it would help somebody else either relate or understand what I was going through. And on the other hand, I do feel it hindered me a bit because I was drumming up all these emotions that were really quite difficult for me.

TReid:
Girl Gone Blind has lead Maria to other outlets

MJ:
I knew that if I wanted to start making something of Girl gone Blind I probably needed to get on Twitter and I needed to start reaching out to all of these other avenues. And that’s where RNIB Connect Radio discovered me.
Now I do a weekly segment for them ; chatting with Girl Gone Blind as a Lifestyle Blogger. We talk about different issues and different situations that we encounter.
I also do a podcast, we call it the LHON Report. We do interviews with people in the LHON community and we also talk about our experiences.
This has turned into this wonderful place that I have set myself in and I absolutely love doing it and it’s so weird for me to say that I love what I do and it’s all because I lost my vision.
It’s been a crazy three years but I’m headed to a good place I just know I am and I’m just going to keep that arrow pointed that way and see where it goes.

TReid in conversation with Maria:
Sounds like a great plan

MJ:
Oh And I’m going to learn how to type Thomas…

TReid in conversation with Maria:
Yes! Yeah!

MJ:
Giggles… Goals, Blind goals.

TReid:
There it is! Hash tag Blind Goals. (#BlindGoals)

[Laughter from both and MJ claps her hands!… audio fades out]

TReid:
Maria Johnson is journaling her way through her adjustment to blindness. She’s a girl gone blind, but she’s not traveling alone.

She’s inviting those with LHON , those experiencing vision loss and others to ride along. Hopefully relate to the experiences and maybe even be inspired to continue on their own paths.

Remember that thing about Maria not using the keyboard?
The truth is Maria didn’t let that become an excuse for not starting or maintaining her blog.

She held on to three words that she says can help her through most things…

MJ:
IGotThis! That was my mantra. I got this!

For more on Maria?

MJ:

My website is girlgoneblind.com.
I’m on Facebook at Girl gone Blind
and on Twitter a@Girl_Gone_Blind
And on Instagram @GirlGoneBlind.

TReid:
I’m Thomas Reid

[MJ: It is, it is, it is!]

TReid:
for Gatewave Radio,
[MJ: Ok, now what?]

TReid:
audio for independent living!

Following the Gatewave story, I included a “song” created using Maria’s words specifically “I got this”.

Reid My Mind Radio: A Note on Notes on Blindness

November 15th, 2016  / Author: T.Reid

In this episode of RMM Radio, I take a look at Notes on Blindness, a new film released in the US and premiering in NYC. It’s the story of John Hull who recorded his thoughts, observations and more on audio cassette. This Gatewave story includes a conversation with Co-Director Peter Middleton.

 

Scenes from the movie Notes on Blindness super imposed in the head of John Hull.

It’s pretty hard to watch a movie about someone going blind without thinking of my experience. Checkout some of my own personal recordings included in this episode.

 

If you haven’t yet, make sure you Subscribe to RMM Radio bit.ly/RMMRadioSubscribe
– In the meantime, hit the Play button below!

 

Resources:

 

Transcript

 

TReid:

 

Today I am sharing a recent piece for Gatewave Radio. A first of sorts for me.
A story about a new film being released in the United States on the topic of blindness.

This was a challenge for me, I’ll tell you why after you take a listen.

Let’s Go!

[Sample from Kurtis Blow’s AJ… “1, 2, 3, 4 hit it!]
Music … Reid My Mind Radio Theme

[Notes on Blindness Audio:
John Hull:
This is cassette 1 , track one, um… fades out]

TReid:
This audio is from the movie titled Notes on Blindness, just released in New York City and playing at the Film Forum.

Theologian, John Hull using a cassette recorder, documented his experience and thoughts as his vision faded beginning in 1983.

The film was produced using both actual   tape of John Hull and his family as well as interviews he and his wife Marilyn had with co-directors Peter Middleton and James Spinney.

Actors portray John and his family, but they are lip syncing to the recorded dialog.

I spoke with co-director peter Middleton (PM) via Skype.

PM:
Using film to try and convey the sightless experience is quite an exciting creative challenge for us. So undoubtedly there was that sense of artistic project which first attracted James and myself to John’s story.

TReid in conversation with PM:
Water seems to play a big role; the idea of the rain, the tsunami…

PM:
We can’t take much credit for that. It’s all in John’s account. After losing sight he had these incredible powerful operatic dreams that were, often water was this kind of analogous feature of them…
He would have dreams of water sort of rushing down and sweeping his children away and dragging him to the depths of the ocean. And all this kind of very powerful imagery that was just absolutely kind of laced throughout his account. And of course the connotation of water as the bringer of life.

TReid:
Remember, The original audio used throughout the film was recorded via cassette in the 1980’s. Audio restoration, editing and sound design  are other artistic elements of the film.

It was the inclusion of audio description that gave me access to some of the visual techniques used to tell the story.

Like Shadows, blurred or out of focus fades and sun spots.
Darkness acting like periods, concluding a statement, some times
an exclamation mark or bold emphasis highlighting a turning point in his life.

Peter says audio description served more than giving people with vision loss access.

PM:
Since we’ve been releasing as well we’ve been trying to open this conversation around accessibility and different ways people could approach the film so it has taken on that kind of social angle as well which we’re very  much relishing and very much hoping to push further.
TReid:
In addition to the audio description, a Virtual Reality experience and enhanced audio version were created.

PM:
Which rather than having an external audio narration as you would do in audio description, actually built in  more narration from John and Marilyn, the key subjects of the film, along with sort of sound design and music. We’ve been releasing these audio tracks with a smart phone app that allows audiences to sync that up in cinemas or on TV o\r on DVD or home  or what have you.

TReid:
Director Peter Middleton said John Hull was very specific about assuring that Peter and his Co-director James Spinney understood this was just one experience.

PM:
He was always careful to point out that he didn’t intend to speak for or on behalf of anybody. So we were aware that our kind of knowledge and our experience of blindness is very much refracted through his subjective story and subjective account.

TReid:
Yet a close examination can provide some insight into the shared vision loss experience. Like the strong need to continue.
For some that means continuing an education or a hobby.
In Hull’s case it meant his career.

[Notes on Blindness Audio
John Hull recalling a conversation :
No, look, how do blind people read big books?
They said, they don’t!]

TReid:
Finding new ways for accomplishing a task, well that’s a big part of a person’s adjustment to blindness.

[Notes on Blindness Audio
John Hull:
The first thing I did was build a team of people to record books for me

With ingenuity and a little bit of help there were problems that could be solved.]

TReid:
Resolving some of these basic difficulties offers hope!

Until… the next even more difficult problem arises.

[Notes on Blindness Audio
John Hull:
It wasn’t until The final tiny bit of light sensation slowly disappeared that my mood changed.]

TReid:
Another obstacle in the process of adjusting to blindness, , maintaining or establishing relationships.

Hearing his daughter scream as she plays in the garden,
John tries to quickly get to her aid.

[Notes on Blindness Audio plays in the background.]

When he arrives , Marilyn is comforting her and already has the problem under control.

[Notes on Blindness Audio
John Hull:
That was a frightening moment.]

He struggles with feelings  of inadequacy as a father.

[Notes on Blindness Audio
John Hull:
The discovery that you are useless is not a nice discovery for any father to make.]

Relationships with his wife, parents and even with God are all parts of his own journey.

Notes on Blindness, while a personal portrait of one man’s experience losing vision, is a poetic but practical look at the journey through loss.

Take for example, the role and importance of adaptations.

[notes on Blindness Audio playing in the background.
John his son Thomas saying bye to one another. ]

After Walking his son Thomas to school in the morning,
we watch as the father and son practice their special way of saying goodbye.
It’s the equivalent of both child and parent watching one another move further apart while assuring both the other is just still close
enough if needed.

[Notes on Blindness Audio: Their exchange of goodbyes growing further apart and his son Thomas’ voice fades with each goodbye.
John Hull describing the practice:
Echoing in chorus!]

We witness not only the bonding between father and son, but Hull’s appreciation for these small yet meaningful adaptations in his life.

[Notes on Blindness Audio
John Hull:
“I Love this!”]

Treid:
It’s not a movie for just the audience.

TReid in original conversation with PM:
What have you personally learned about blindness after all of this work?

PM:
Spending so much time with John and being able to listen to his account and researching has lead us to further research on different kind of people’s experiences. It’s been an incredibly fascinating process for us.

TReid:
Vision, often considered as the most feared sense to lose, yet the dialog offered by Hull and the sound design and music have a very calming effect. As if saying, it will all be  alright. Or maybe that’s just my final note on blindness.

The film has been nominated for 6 British Independent Film Awards including:
Best British Independent Film
Best Debut Director
Outstanding Achievement in Craft

You can catch Notes on Blindness beginning November 16  in New York City
at the Film Forum. Other cities are soon to follow. As well as on demand distribution in the future.
Visit BlindnessMovie.com for more on dates and information.
you can find them on Twitter @OnBlindness

I’m Thomas Reid;

[Notes on Blindness Audio
John Hull and son Thomas exchange goodbyes…
John Hull:
Until his voice becomes faint.]

TReid:
For Gatewave Radio

[Notes on Blindness Audio
John Hull and son Thomas exchange goodbyes…]

TReid:
audio for independent living.

[Notes on Blindness Audio
John Hull: “I love this!”]

T.Reid:
When I received an email asking if I were interested in doing a story on a new movie called Notes on Blindness, my first thought was …
“I don’t think you’re going to want me to do that!”

I like to profile people who are doing things that ultimately dispel the misperceptions about blindness.

I’m cynical  when it comes to movies  about blindness and disability.
My experience says they are probably going to be the sappy  oh look at this poor guy or wow, isn’t this person so amazing!

This, was not that!

Naturally I thought of my own experience while watching.
I guess you could say it was a comparison of notes!

The scene when he rushed to his daughter after hearing her scream;
I had my own similar experience and questioned my usefulness in emergencies.
Fortunately, I realized there’s no way I’m useless… as Hull felt at that time.

Again, the experience of blindness is specific to the individual.

One scene, John talks about how he can no longer
conjure up an image of his oldest daughter or his wife…

I never experienced that…
In fact I vividly remember both and
way more.

I don’t think it’s a spoiler so I’ll share that Hull comes to see blindness as a gift.
He’s clear to say it’s not a gift he would want for his children, but he recognizes there’s something there.

I don’t think I ever referred to it as a gift, but I know it’s not a curse.

I found myself very much curious about how John’s vision loss impacted his children. Specifically, his oldest daughter Imogen  who was around the same age as my oldest when I went blind.
She reflects on her relationship  with her father both as a child an as an adult in a short film titled Radio H.

[Audio from Radio H]

Notes on Blindness was focused on Hull’s experience with blindness and
not much time interacting with his kids.
At least not much that showed a playful side.
Like the tapes he made of his children performing and
him telling adventure and spooky stories.

It reminds me of some of the early recordings I did with my kids…

[Audio of Thomas and his children when they were younger.]
I’m a  sucker for Daddy Daughter stories!
For more on Notes on Blindness or Radio H;
see the links in the resource section included with the notes for this episode on Reid My Mind.com.

While you’re there, hit that subscribe button or subscribe to Reid My Mind Radio via iTunes.

Peace!

Reid My Mind Radio – Are Blind Conferences Fantasy

November 2nd, 2016  / Author: T.Reid

Back from another Pennsylvania Council of the Blind Conference. This is not a recap.

After all of these years, this was the first time I recall hearing that such conferences  have been described as fantasy. Fantastic! Yes, but I never heard them described as being a fantasy.

Unicorn with Sunglasses

You could say this is my opinion on  the idea or you could just say it’s what was on my mind!

If you haven’t yet, make sure you Subscribe to RMM Radio
– In the meantime, hit the Play button below!

 

 

Transcript:

Just about two weeks ago now, I attended my 11th conference of the Pennsylvania Council of the Blind.

My first conference was in 2006. I attended with a group representing the newly formed Monroe County  Council of the Blind or as we called it MCCB. We were considered a young, energetic  and extremely enthusiastic bunch of new comers to the organization.

Most of the group were newly adjusting to blindness. The MCCB itself was formed after we met at a local support group and decided we wanted to do more with our energy than talk about the issues.
Don’t get me wrong, I am all for talking and sharing our stories to help one another better manage the experience, but for many of us we were used to doing more and had a need to put our energy to good use.

I’m sure each of us who attended that first conference had our own expectations. I don’t fully remember what I expected, but I know I was open to learning. I can definitely recall trying to process so many different emotions throughout the weekend and during the first few weeks to follow.

Even today some things really stand out from the experience.

Like when one of our members Mary Ann,  was given a Braille menu at an Olive Garden during dinner on our first night at the conference.

Her excitement was infectious! It was just a menu! In fact, it was just Olive Garden – no shots, I enjoy the breadsticks and salad!

As the only proficient Braille reader in the group, Mary Ann immediately designated herself as the official menu reader for the rest of the group who did not read Braille, but even for those who could read print.
And the group honored that request, not as though they had a choice!

As a new advocate at the time, I was both excited for her but yet upset that she was still so surprised by the availability of the menu. Obviously something she did not experience often.

The next morning, I got my first glimpse of an accessible tour of what I recall was a train museum.

The tour guides used descriptive language as opposed to assuming everyone could see and recognize various features about the characteristics of these historic trains.

Some of the materials were available in alternative formats to standard print including Braille and large print for those with low vision

This may not seem like a big deal for those in the know, but when you’re new to blindness and beginning to believe you have to get used to just missing out on certain things;
observing that it doesn’t really take that much effort to be included, well it’s a real awakening.

I recently heard these types of tours and activities or even the conferences themselves  described  as fantasy.
The idea is that this is not and will never be the real world. The real world I guess in the minds of those who believe this is fantasy will always  exclusively cater only to those with sight and forever exclude people with vision loss.

At various times  throughout my journey with vision loss I came close to believing things can’t change. My struggle with cynicism was only made worse  with the random encounters with those who remind me that they see me first as a blind man and their definition of that goes beyond my inability to see.
For them it’s the subconscious stereotypes and misperceptions that create their image of who I am. the things I do or don’t do are viewed through a lens painted with layers of misinformation that so much of society has been lead to believe about blindness and disability.

Being conscious of that  comes with a price.
I can sometimes put more pressure on myself to   do something “right” believing that if I veer off course or make a simple mistake I may confirmed a false truth about blindness.

The fantasy world of blind conferences or conventions actually provided me a place to practice all of my blindness skills in a friendly atmosphere.
These conferences also  offered me a chance to relieve myself of the burden of believing I had to represent every blind person in the world.

There are times when I can get up from my chair during a conference  and almost perfectly walk out of the room using my white cane and easily navigate my way to my destination.

Then there are the other times when I get a little side tracked for various reasons.

These conferences have over the years taught me that both results are okay.
There’s no perfection.
People with all levels of  Orientation and mobility skills have and do both.  People with 20/20 vision do both.

it’s not my responsibility to explain how my cane tapping against  a planter or some obstacle in the middle of the room is not a sign that I am lost, but rather me gaining access to that information to determine which is the best course to avoid that obstacle.

I can’t change what someone else sees. This is determined by their experience and knowledge , not me. I know there are those who will lump all people who are blind together.
We share the experience of blindness, but for many that’s it! We’re different in so many ways.

Maybe these conferences are considered fantasy based on the cooperation and the way people tend to work together.

Since that first conference, I watched how people with all different levels of vision loss could help one another.

The person in the elevator who has low vision searching for the right button extends their gratitude to the person with no sight whatsoever who quickly identifies the button using Braille.

the teamwork of one gentleman using his white cane while  supporting a man with both vision loss and mobility challenges , slowly losing his strength, make his way to his hotel room.

Throughout the weekend, I witnessed people  all in support of one another. I saw more to blindness than I did prior to the conference. It confirmed that  not only was I right in thinking my vision loss didn’t have to mean more than I can’t see. It didn’t reduce who I am as a person. it didn’t put me in another class of people. It didn’t in any way impact my competence, my manhood my spirit. It simply means my eyes no longer work and I need to figure out other ways to get the information that I need to do certain things.

Since 2007 I’ve been a part of the conference planning team and I have been the coordinator  since about 2010 . My hope each year is that those newly adjusting to blindness will walk away from the conference  believing  that what some see as a fantasy is really inevitable.

There are changing demographics that make accessibility  a much more mainstream term today than even in 2004 when I was first introduced to that word.

Companies like Apple have committed to accessibility  making so many things usable for people with disabilities.
Smart phones and their apps
Television and movies along with audio description
indoor navigation which basically brings  GPS inside.

All of this progress is real!
We can touch it,  put it to use today and measure its effectiveness.

However, we’re not able to count the degree in which the attitudes are changing.

For many people the last few years have been an awakening to things that have existed since this country’s beginning.

The police brutality against people of color
Law enforcement’s corruption and cover ups of these incidents
Racist ideologies and behavior throughout society.

Camera’s and demagogues like Trump bring all of this to the forefront for all to see and confront.

Meanwhile those in the communities effected have been raising their voices in protest forever. The larger society not wanting to believe it or refusing to believe this could be true simply lowered the volume control and went on with their lives.

Blindness according to multiple surveys is ranked as America’s greatest fear… even more than death.

Some of these surveys are as recent as August 2016.

We know that people fear what they don’t know or understand.

This level of ignorance in 2016 is not surprising  but also not excusable.

The other side of this ignorance are those who are overly amazed by blind people living their lives every day.

Successfully living lives shouldn’t be considered amazing.

Maybe then we raise the bar for what we expect from people with vision loss and others with disabilities. And there’s no doubt that these expectations would be met.

In no way will I frame my perspective as a fantasy. It’s in progress. The more access gained the more people will have a chance to hear our voices, learn of our stories and rid themselves of their fears. It’s happening, just watch!

Reid My Mind Radio: Structured Negotiation – Not Just For Lawyers

September 21st, 2016  / Author: T.Reid

This episode of Reid My Mind Radio is brought to you by  The RAE of Hope; Shining a light  on a rare childhood eye cancer.
Watch the stories of people impacted by Retinoblastoma, a rare childhood eye cancer. Then share in order to help us spread awareness!

A picture of Attorney Lainey Feingold standing at a microphone

 

Getting back from the break and looking forward to producing  some new stories. I have some ideas but like most things I need to figure out some creative ways to gain access. I’m talking both physically and even virtually…

Today’s Gatewave Radio piece features Lainey Feingold who herself has done much to improve accessibility in the real and virtual world. Her book Structured Negotiation: A Winning Alternative to Lawsuits is now available and as you will hear in today’s piece, it offers so much to those outside of the legal community.

Resources:

 

Transcript

TR:
1, 2, 1, 2 is this thing on
1, 2, 1, 2 is this thing on!
[laughs]

Back again, after a brief hiatus during the summer. Unfortunately, not a summer vacation rather a working, very working summer.
Before we get into this latest piece for Gatewave Radio I wanted to share just a quick note and bring your attention to something that we do every year here on the Reid Compound – that’s my family and I, the whole Reid family. We used to call it pennyPushUps but now it’s actually now called The RAE of Hope and you can go check that out a at Facebook.com/TheRAEOfHope. And the RAE is  R A E  of hope The RaE of Hope.It’s an awareness and fundraiser campaignsupporting children with eye cancer as well as the organization World Eye cancer Hope.

It’s stories about people who have been impacted by this eye cancer.
These stories are in video format however they are fully accessible, the stories are told fully in audio. And this year I am happy to say we  are also including closed captions on the videos that are on YouTube. It’s just a little easier of a process to get the captioning on YouTube than it was for Facebook.

So again, Facebook.com/TheRAEOfHope . You can check out our playlist on YouTube using the short link bit.ly/TheRAEofHope2016. All the links are included with this post.

I’ll be back after this latest piece for Gatewave Radio , Structured Negotiation, it’s Not Just for Lawyers.

TR: In any advocacy movement, you have a number of people who to most remain nameless. they’re not the face of the movement, they don’t have the loudest voice, but they make things happen.

Meet Attorney Lainey Feingold (LF). When it comes to some very noteworthy advocacy success stories, she’s  been involved. In fact, she developed the blue print to a method for reaching agreements called structured negotiation.

LF: Structured negotiations is a way to resolve legal claims without filing a lawsuit.
It grew out of the blind communities desire for accessible technology. Specifically it grew out of the quest for the talking ATM’s back in the 1990’s.

TR: The banks all agreed and not only was that the beginning  of structured negotiations, it was also the beginning of talking ATM’s.

TR: [Asking in conversation during recorded interview,  not narration]
So  how exactly does it work?

LF:  It first starts with the group of people who would be called plaintiffs in a law suit. In structured negotiations their called claimants.
In my work with the  blind community that means individual blind people or blind organizations that have a legal claim but would like an alternative method for resolving it.

TR: To make the process even more clear, Lainey walked me through  a real life example of the process using  a case that is as American as apple pie

[Sounds of baseball stadium including applause, organ music and bat hitting ball followed by cheers!]

TR: Unable to access key features on the MLB website, blind baseball fans
contacted Lainey and her longtime colleague Linda Dardarian.

LF: <> We wrote a letter to Major League Baseball. Bay State Council of the Blind was the core organization behind that effort. We introduced the organizations we introduced the individuals. We said to Major League Baseball you know there’s a lot of blind baseball fans out there they don’t have access to the online games, they can’t access the statistics because you haven’t coded your web site properly. This violates the ADA, but rather than file a lawsuit we’d like to work with you and get the problem fixed. Major League Baseball answered our letter and that was the start of a really great relationship that  continues to this day.

TR: Once all the parties agree to move forward with structured negotiations the next step is agreeing and signing a ground rules  document.

LF That just acknowledged that we’re  doing this process instead of a lawsuit, protected certain confidential information, made sure no one would be penalized.

Then we started a process of meetings. Most of them were on the phone.

TR: Teleconferences made it possible for all the parties located on both coasts to be involved .
The next step is identifying and agreeing on the experts which Lainey says can lead to lots of battles in a lawsuit.

LF: Major League Baseball worked with experts that we recommended. They worked with blind baseball fans around the country, they improved their website, they improved their mobile app, we did testing along the way and  at the end of the process we negotiated a settlement agreement just like an agreement that would have been negotiated had a lawsuit been filed.

TR: Similar to a lawsuit settlement, built into the agreements are methods for monitoring and enforcement.
But unlike a lawsuit, both of these parties are working together and actually  building a relationship with shared goals.

LF: we run into problems with enforcement but when we do we have the relationships to make sure those problems are fixed.

Until I got involved in the issue, I had never really thought about how do blind people access the print information on a standard prescription

Some people use rubber bands to distinguish .
One rubber band is this prescription two rubber bands is that prescription. Or they’ll keep the medication in different places and try to remember which is which.
without talking prescription labels it is a very dangerous situation for blind people.

Even in some of the companies that we worked with, because there are so many stores it’s possible that even with a company that offers talking labels, a blind person can walk in and the person behind the counter doesn’t have any idea what they’re talking about.
So, I do have a post on my website that details what all the companies are doing in the United states with phone numbers to contact if there’s a problem.
TR: Working on more than 70 cases over the past 20 years, Lainey is clearly passionate about the issues.

LF: I  really just wish I could broadcast this from the rooftops!

TR: I guess she could do that, but people would think she’s a bit off. rather, she wrote a book detailing what she learned after 20 years’ worth of cases.
It’s called structured negotiation: A Winning Alternative to Lawsuits.
published by the American Bar Association

LF:  I wrote so that advocates and potential clients and organizations could read it and understand that this is an alternative to filing a lawsuit that could be used for lots of different kinds of cases.

I’m not the only person who uses it. We have a wonderful disability rights bar association that’s national. Other lawyers  have started to use the process.
TR: Despite the success, Lainey says, lawsuits have their place.

LF: Lawsuits can be very important to moving society forward. I give some examples of cases; marriage equality or Olmstead. There’s a tremendous number of cases that needed to be filed..

TR: The book isn’t just for lawyers and advocates
Lainey writes about the back story to cases she has worked on over the past 20 years focusing on accessible technology.
It’s also a resource for those who want to get an understanding and develop the mind set to work in collaboration.

LF: You need to have an attitude of cooperation. Which is different from the attitude you need to  be fighting with somebody.

TR: [Asking in conversation during recorded interview,  not narration]
You’ve been working with the blind community for over 20 years now, what sort of things have you taken away from relationships that you’ve built?

LF: you know I wasn’t familiar with disability issues at all until I somewhat randomly took a 4 month position as the Disability Rights Education & Defense Fund (DREDF) in 1992.
I was planning to stay for 4 months instead I stayed for 4 years .
So it’s really just been an amazingly great way to be able to practice law  and have clients that are friends and to understand the disability community from inside of it.

TR: The next time you’re completing a transaction at a store  using an accessible point of sales terminal to process your  credit or debit card, or you’re making use of a talking prescription label or ATM, keep in mind that those things came about because of people like Lainey  developing relationships making a more accessible world for all.

To reach Lainey you can visit her on her web page which
by the way is a great example of a well-organized accessible site.
She’s at LFLegal.com
You can send her email directly at lf@lflegal.com.
She also posts about accessibility on Twitter at @lflegal.

her book, Structured negotiation: A Winning Alternative to Lawsuits is currently available via the American Bar Association’s website. For those with print impairments it is available on Bookshare.org.

Big thanks to you Lainey for helping to make the real and virtual world more accessible.

I’m Thomas Reid, for Gatewave Radio

[LF: “I  really just wish I could broadcast this from the rooftops!”}

Audio for Independent Living!

TR:

A few months ago, I began incorporating transcripts into  all of the audio  I produce for ReidMyMind Radio. I made sure that this year’s Retinoblastoma Awareness & Empowerment campaign for Childhood Cancer Awareness Month included closed caption.

Lainey actually had a big influence on that.

It was during our conversation that she mentioned  how she pays for the production of transcripts in order to make sure anything she is doing is accessible.

<RMM>

I had to think about that for a while…

As an advocate for access, I want others to realize why things should be accessible to people with vision loss, but I’m creating things that are inaccessible to a segment of the population.
Plain and simple, I had to check myself.
Yes, it’s a little extra work, but it actually improves my process… once again proving that accessibility has benefits that go beyond the community receiving access.
I’m in no way patting myself on the back – because I don’t deserve that.
I am thanking  Lainey for helping me become better at accessibility.

Peace!

PennyPushUps is now The RAE of Hope

September 10th, 2016  / Author: T.Reid

PennyPushUps since 2013 has been my family’s awareness and fundraising campaign to spread information about Retinoblastoma, the childhood eye cancer that is responsible for my loss of both my eyes.

As the parent of a RB survivor it seemed right to try and do something to spread awareness.

 

The original idea was pretty straight forward; I’ll complete 100 push-ups a day and you sponsor me like a walk-a-thon just 1 cent per push-up… do the math!

 

The campaign turned into us sharing our story as well as others impacted by the cancer. Probably not a shock considering I enjoy telling people’s stories. The shock was I thought I could easily do this on video. Fortunately, I wasn’t 100 percent wrong. (Non visual video editing is possible… I do it!) Even more fortunately, my wife thought she could do a better job at the video production. She was right and she began to earn her keep and her name… Super Producer Marley Marl now formally known as Super Producer Marlett!

 

It became apparent that people weren’t really interested in my push-ups. One of the comments on the videos went something like; “Really interesting and important but why is there a guy doing push-ups.” LOL! I guess they didn’t listen to the introduction which summarized everything I just said about the campaign.

 

Logo for The RAE of Hope - a beam of light shining on to the earth from space

Focusing on raising awareness & empowering others while raising funds for World Eye Cancer Hope the name sort of wrote itself when we let the universe take over… The RAE of Hope, “Shining a light on a childhood eye cancer”.

 

We just finished airing our first full week of videos. We post them to our Facebook page “The RAE of Hope” and via YouTube.

 

I would love for you to come on over and “Like” our FB page or follow us on twitter @TheRAEofHope. The stories this year feature a bit more in the way of video production but the full story is told via audio. In fact, this year we incorporated closed captions available via YouTube, so we’re fully accessible – the way it should be!

 

Below is our playlist of all our videos so if this works properly you could pretty much bookmark this post and watch the latest video as we move through the month. We post new videos every Monday, Wednesday and Friday.

 

Tell a friend and help us spread the word about Childhood Cancer it can truly save a life and sight!