Visually Impaired: Now What?

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During National Autism Month, Think About Employment Opportunities for Adults Who Are Blind and Have Autism Spectrum Disorder

This month is National Autism Awareness month. The purpose of this post is to increase awareness of autism and to encourage you to think outside of the rehabilitation box!

When I was studying for my degree in vision rehabilitation for adults, I learned about self-stimulating behaviors often called "blindisms." Behaviors such as repetitive speech or echolalia, constant rocking whether sitting or walking, inability to sustain a conversation, preoccupation with one topic, and resistance to and anxiety over small changes are just a few of the behaviors. These behaviors were characteristics of children and adults who were congenitally blind (eye conditions present at birth), experienced limited physical and mental stimulation, displayed learned dependency, and often labeled with a lower than average cognitive ability. Not until several years later, when I heard about the blindness and autism project at the Maryland School for the Blind, did I begin to question some of the labels placed on a few clients in my early career. I am going to relate my experiences with three young men.

Teacher giving personal instruction to male student

About "John"

One young man, I'll call him John, spent hours sitting in front of a television listening to and mimicking cartoon characters as a child. He was 30 years old when he came to the center where I taught. Many daily living skills were difficult for him to learn because of his limited experiences. At 30, John had never personally placed a letter in a mailbox and had no concept of the process. Mobility was a challenge because he maintained a metronome-like rocking rhythm even when walking. Frequently, he would respond to questions with a perfect impression of a well-known television character.

Then one day a different John appeared on stage in the center auditorium during a talent show. He stood tall, didn't rock, and entertained with a song that had extremely complex rhythms and word patterns that he articulated flawlessly. Along with his musical talent and ability to mimic almost any voice, John was an excellent braille reader.

A colleague and I often talked about John's employment possibilities. In spite of his eccentric behaviors, we believed he could work for a recording studio narrating children's books or performing voiceovers for television. Unfortunately, when John returned home, he was placed in a sheltered workshop on a behavioral contract to extinguish the very talents that could have given him a meaningful career and pleasure to many children.

About "Tom"

In contrast, more than 10 years later, I worked with a young man, I'll call him Tom, who attended a program for high school graduates offered at our university during the summer. As a child, Tom attended the Maryland School for the Blind and participated in the autism and blindness program. His mother was a teacher and reinforced the skills Tom learned at the Maryland School. During the summer program, Tom definitely struggled with frustration and occasionally anger trying to adjust to a new environment and finding ways to cope with a schedule that changed almost daily. He succeeded in living in a dorm with a total stranger for seven weeks; paid his bills, although sometimes he misplaced his checkbook; and completed his university course.

Tom's greatest achievement was socializing with the other students in the summer program. During social events, he and another student entertained by recreating a late night call-in radio program. They took turns role playing the disk jockey and a call-in listener. It was obvious to everyone that Tom was in his element in the role of DJ.

When Tom returned home in the fall to attend his local community college, adjusting to the rigors of college work was challenging during his first semester. However, by the middle of his second semester, he was traveling independently on paratransit, maintaining his finances with a debit card, and even contributing to the household expenses. Academically, his grades improved. That semester, he took an introduction to broadcasting course and applied for an internship with a popular morning radio show. Unfortunately, Tom did not receive the necessary supported employment and guidance during the internship, which might have led to employment. There is no record that Tom has ever been employed.

About "Bob"

Another student, who attended the summer university program, I'll call him Bob, showed clear signs of autism. Unlike Tom and John, Bob had low vision; however, he never made eye contact with anyone. During the first mornings' get acquainted breakfast, he walked in, set up his computer on a table in the middle of the room, and never moved. Bob never interacted with his peers that morning or at any group activity. His conversations with me were restricted to computers and websites. Bob thought the summer program needed a website and developed one.

Although I was certainly no expert on autism spectrum disorder (ASD), Bob's impaired reciprocal social interactions and fixation on computers throughout the seven-week program, led me to recommend that he be tested for ASD, so he could make an appropriate choice of major in college. There was resistance from the family and never any follow-up from professionals. I saw Bob again two or three years later. At that time, he told me that he was studying to be a teacher.

Understanding the Relationship Between Blindness and Autism

Could these young men have found meaningful employment that fit both their blindness and autism had the rehabilitation professionals serving them known about the relationship between blindness and autism? But, even now, how many professionals serving adults with vision loss receive training in autism? There seems to be a considerable amount of information and knowledge about children with vision loss and autism. Somewhere between adolescence and adulthood, however, someone forgot that those children grow up to be adults and need services to live independently and work at a fulfilling job where they can use their strengths, talents, and skills.

According to the Centers for Disease Control (CDC), over three million adults have some autism spectrum disorder. Isn't it time for all professionals working with children and adults who have the dual disabilities of vision loss and autism to work together? How frequently do the teachers of visually impaired children and the vocational rehabilitation counselors work in partnership to provide seamless services to their shared students/clients with autism and blindness? How frequently do professionals knowledgeable about the differences and similarities between blindness and autism collaborate across agencies sharing suggestions and guidance for appropriate assessment, instruction, and program planning? If the professionals who served my three students had understood the differences between self-stimulating behaviors of autism and blindness, focused on the students' strengths and not their deficits, how much richer would their lives have been over the past three decades? How much richer would the world have been if they could have shared their knowledge and talents?

Additional Information on Autism

A Cross Disability: Visual Impairment and Autism

Children with Autism and Blindness

The Child Versus the Label

Autism Focus: Optic Nerve Hypoplasia and Autism: Common Features of Spectrum Diseases in the Journal of Visual Impairment and Blindness


Topics:
Independence
Low Vision

Dancers: A Tribute to My Nine Guide Dogs

I wrote this poem while walking 16 blocks with my sixth guide dog to a dental appointment. I am sharing it to honor my nine guide dogs on April 26th, International Guide Dog Day!

Dancers: A Tribute to My Nine Guide Dogs

Yellow lab dog guide, winking at you.

We are cloud dancers,
You lead and I follow.
Our steps synchronized
Our bodies swaying to the same rhythm.

Swept along in the current of the jet stream.
Floating lightly on the swell of an updraft,
Swooping into a glide down the slope of a down draft.
Side slipping around a gaggle of migrating geese.
Pausing a few beats to let a thunderhead rumble past.

Through fog and mist through falling snow we whirl,
Our movements in perfect unison.
Where your paws lead,
My feet follow.
What does it matter,
If only we two hear the music.
We move together as one being.
We are Cloud dancers, you and I.

This poem was first published in "Behind Our Eyes, Stories, Poems and Essays, Written by People with Disabilities," in 2007.

Additional Information

Dog Guides for People with Vision Loss

Guide Dog or White Cane

Getting Around


Topics:
Getting Around
Low Vision
Personal Reflections
Reading

Four Things I Learned from the 1Touch Self-Defense Project

In March, I attended the AFB Leadership Conference in Alexandria, Virginia. One of the numerous workshop sessions on the agenda that I found interesting was on the 1Touch Self-Defense Project. I had taken a self-defense class for people with visual impairments, but it was many years ago, and I have to admit I was pretty rusty on the topic and even more on the physical techniques. So, I decided to attend the class to get a refresher and update my skills and knowledge. The session was only for about an hour, but I learned a wealth of information that I want to share with you in this post.

A picture of Empish doing a self-defense move with her hands near her shoulders

Four Things I Learned from the 1Touch Project™


#1: Reasons Why Visually Impaired People Don't Learn Self-Defense

At the beginning of the session, the instructor shared his martial arts background and how he started the 1Touch Project™. After, he posed a question to the group: "Why is it that people with visual impairments don't take self-defense classes?" Some participants said it was a lack of transportation; Others said a lack of interest or awareness, while others said that maybe newly blind people might be fearful about leaving their homes and don't feel safe venturing out in public. Many of us agreed that there is a perceived fear that carrying a white cane and/or being blind makes you more vulnerable and at higher risk to be a victim of a violent crime. This, of course, is not necessarily true, but it is an assumption people have that can make life challenging for those of us with vision loss. We learned that this is one of the primary reasons the instructor started the 1Touch Project™—he wanted to help people with disabilities, particularly those with visual impairments, be able to feel safe and defend themselves.

#2: Don't Assume an Initial Interaction Is an Attack

The next thing I learned was not to assume that an initial interaction from a stranger is an attack. In the conference room, we partnered up and practiced lightly touching each other on the arm, hand, and shoulder. Sometimes, when people touch you, they are just overly zealous to help a “blind person” or just overly friendly in nature. Just because a person approaches you and touches you in some kind of way, does not automatically mean that they are trying to harm you. I found this to be a totally different way of thinking about how people approach me.

#3: Physical Techniques to Defuse the Situation

A side view of Empish demonstrating a self-defense stance with her feet apart and her hands up near her shoulders

During the session, we learned physical techniques to help defuse the situation in order to reclaim our body and personal space. For example, if a person touches your arm or shoulder, you place your hand on their hand and gently, but firmly, remove it. This lets the person know that although you acknowledge the interaction, it is not appropriate for them to come into your personal space without your permission. Additionally, placing your hand over their hand lets you know the exact location of their body as it relates to yours and the position of their hand. For example, are they facing you or turned to the side of you? Are they touching you with their left or right hand (which can be determined by touching their thumb)? This information is very helpful because if the situation were to be threatening, you would have key information to act in order to defend yourself.

#4: How to Keep a Steady Stance

Another physical technique I learned was how to place my legs. Stepping back with my right leg while keeping my left leg steady helps me get ready to defend myself. I can then use my hands to further defend myself from my attacker. I realized that this technique is not a natural one and that practicing will improve my balance, formation, and reaction time.

Before we knew it, the session was over, and everyone was still geared up to learn more techniques and ask more questions. I think this goes to show that the topic of self-defense is an important one that needs continuous exploration and conversation. People with visual impairments have a right to feel safe in their neighborhoods and communities. If you want to learn more about the 1Touch Project™, visit their website.

Self-Defense for Individuals with Vision Loss

The 1Touch Project™: Personal Safety for People Who Are Blind or Visually Impaired

"Sightless Self-Defense" Can Help You Stay Safe

Dealing with Crime or Domestic Violence As a Person with a Disability


Topics:
Health
Independence
Low Vision
Self-Advocacy
Social Life and Recreation

How I Honor Earth Day Every Day As a Person Who Is Blind

Editor's note: April 22 is Earth Day. Each year, Earth Day marks the anniversary of the birth of the modern environmental movement in 1970. Growing out of the first Earth Day, the Earth Day Network is the world’s largest recruiter to the environmental movement working with more than 50,000 partners in nearly 195 countries to build environmental democracy; 2020 marks the 50th anniversary of the first Earth Day. In honor of this milestone, Earth Day Network is launching a set of goals to shape the future of 21st century environmentalism.

"Waste Not, Want Not"

woman washing bottle in sink

From the time I was a little girl, I was aware of the importance of not being wasteful and recycling. My parents and grandparents would reuse old household items. Things like jelly jars would easily substitute as drinking glasses. Old brown paper grocery bags would be reused to cover my school paperback books to keep them from damage. My parents would also take bags of old clothes and furniture to donate them to nonprofits like Goodwill and the Salvation Army. So, as we get ready to celebrate Earth Day on April 22nd, I reflect on my childhood. I realized that I still practice many of these things and more. But instead of observing one day annually, I honor Earth Day every day. I feel it is important that I do what I can to protect the planet that I live on. I know that I can’t do everything, but I can do somethings. I don’t allow my visual disability to stop me from participating in this significant event. So, you might be thinking what can you do to help the planet? How can a visually impaired person fully participate in honoring Earth Day every day? You have asked the right questions to the right person. I encourage you to check out my list of things I do as part of my life routine.

My Checklist for Recycling

woman putting bottle in blue recycle bag
  1. I participate in my county recycling program. A couple of years ago, my county launched a recycling program that was free. I received a flyer in my water bill and signed up immediately. What I got was a box of blue recycle bags for plastic bottles, metal cans, and glass jars. I also got a blue storage container for paper, like junk mail, newspapers, cardboard, and other paper materials. I have labeled these for easy identification. From time-to-time, I even shred confidential documents like medical records, credit card, and bank statements and place them in the blue recycle bags. When my bag or storage container fills up, I take them to my driveway, and they are picked up by my county’s sanitation department.

  2. I use cloth earth bags for grocery shopping. These bags work better than the plastic ones that you get in the store. Plastic bags are filling our landfills and don’t decompose well. When I use my cloth earth bags, I have a lot more room for my purchases, and I can use them over and over again. I even have a couple with insulation for when I get refrigerated or frozen foods, and it keeps the food cold until I get it home. I keep them handy by hanging them on the door knob of my pantry door in my kitchen, so they are always ready to go when I leave for shopping. Using earth bags greatly reduces the amount of plastic that I consume thus helping the planet.

  3. I take old computers and electronics to a recycle center. I don’t place these items in the trash. Taking items like this to a recycle center is better because they will be properly disposed of. Just be sure with computers you clean off your hard drive first.

  4. For electronics related to vision loss, I do things a little differently. In the past, I have sold old assistive technology devices instead of throwing them away or letting them collect dust. Items like old talking dictionaries, Victor Readers, CCTVs (video magnifiers) and braille note takers sometimes can still be used again by persons who are blind or visually impaired. If they can’t be sold, depending on their condition, they can be donated to a vision rehabilitation center. I have also given my old white canes and cane parts to a local orientation and mobility instructor who takes my donations and uses them for people who can’t afford a white cane.

  5. When it comes to old clothes, I donate to a couple of nonprofits. Professional clothes such as blouses, skirts, slacks, and suits, I donate to "Dress for Success" because they help low income women get on their feet and return to work. They have even worked with blind and visually impaired women. I also donate clothes and household items to the American Kidney Fund because they will come to my home to pick up items. I donate furniture to the Salvation Army and Friends of Disabled Adults and Children. I like donating items to nonprofits that have been around for a long time and who also assist people with disabilities in my local community.

  6. I use rechargeable batteries. I use these kinds of batteries especially for my talking clocks and various TV and DVD remote controls. Rechargeable batteries not only help the environment but also save me money by not having to purchase numerous batteries over and over again.

My list is not exhaustive. There are probably a ton of more things that can be done to honor Earth Day. But I think my list is a great way to get started in helping our planet and others too. I am sure after reading it you might realize that you are already doing some of these things. Or you might realize that maybe you can add some of my suggestions to your life too. Regardless, it's time we honor Earth Day every day!

Resources for Earth Day for Individuals with Vision Loss

Earth Day Information

How Labeling and Marking Can Help You Recycle

Gardening and Yard Work Tips for Individuals Who Are Blind or Visually Impaired

Raised Bed Gardening, An Easy Alternative for Gardeners with Vision Loss


Topics:
Arts and Leisure
Holidays
Social Life and Recreation

Raising Awareness About Living with Low Vision Through Poetry

Editor's note: In today's post, Maribel interviews Dave Steele, a visually impaired poet and song writer. We first learned of Dave and his inspiring poetry during Valentine's Day when he shared a poem on retinitis pigmentosa. Learn more about Dave by reading his personal story.

Raising Awareness About Living with Low Vision Through Poetry

Dave Steele holding his book, Stand with Me RP

Did you know that the month of April each year is set aside to celebrate National Poetry Month? It’s a time when poets get to shine a light on their craft through a variety of events with the support of the Academy of American Poets and other poetry organizations. Teachers in schools are also encouraged to explore poetry in its many forms with their students and to appoint a “poet of the day” during the month.

At VisionAware, we welcome a visually impaired poet, Dave Steele, who is creating quite a following with his book, “Stand By Me RP”, as he raises awareness to what it is like to live with vision loss after being sighted. The message in Dave’s poems can help those going through similar issues to feel that they are not alone in what can be an isolating stage of vision loss.

Read Dave Steele's poem, "This Thing They Call RP," to learn about his experience living and coping with vision loss.


"This Thing They Call RP"

A Poem by Dave Steele

I know you've never heard before
of this thing they call RP
So let me help you understand
how it affects people like me
It's always lived inside me from ancestors faulty gene
To untrained eye unnoticed lie
remained for years unseen
Whilst in my early twenties
it began to show first trace
I noticed eyes would struggle
moving from dark to light place
But felt I wasn't ready
so this RP I'd deny
No helping hand stick head in sand
as seeing days pass by
For years I hid it from myself
as wrong as that might be
Till one day it was obvious
that it was hard to see
So off I went to specialist
to take the blindness test
I knew that I would fail them
but that's probably for the best
When doctors diagnosis came
delivered hard and cold
I may be seeing nothing
by the time that I grow old
It hit me like a hammer
when confirmed what we both knew
Chance my children were affected
would be simple 1 in 2
The guilt I felt another tear
as I began to grieve
Yet to the outside world
it's difficult to just believe
My blindness creeping inwards
like a speckled hazy tunnel
My grip on independence vanished
down this darkened funnel.

Began to feel so anxious
every time that I went out
No longer do the simplest things
be filled with fear and doubt
My world was caving in on me
I needed to adjust
I lost some friends and family
I learned just who to trust
I never needed sympathy
Just someone to understand
No need for full time carer
just sometimes a helping hand
I battled for my confidence
I learned to use my cane
I learned to see the best in things
go dancing in the rain
With time my wounds were healing
even though my eyes got worse
Began to write it down for you
through poem song and verse
To fight to raise awareness
for those going blind alone
So through my words our voice be heard
Not isolate at home.

Copyright (c) 2017 Dave Steele

More About Dave Steele, Poet and Songwriter

Visually Impaired Poet and Songwriter, Dave Steele, Is Raising Awareness About Living with Retinitis Pigmentosa

A Poem on Retinitis Pigmentosa to Shine on Valentine's Day

DVD Blind-Sighted: Featuring Dave Steele and his wife discussing how sight loss challenged their family life

Book: Stand By Me RP

Stand By Me RP Facebook Awareness Page


Topics:
Low Vision
Personal Reflections
Reading
Retinitis Pigmentosa

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