Blog

Disability Community Leaders, Disability history, Solidarity2, The coming generation

Remembering Darick Williamson

Last week, unexpected sad news came to the Louisiana Center for the Blind (LCB) extended family. Darick Williamson, cane travel instructor and a teacher of future cane travel instructors, died suddenly from a heart attack on March 22, 2018. Darick was my cane travel instructor when I was an LCB student ten years ago. He also taught and mentored several of my blind friends who are now teaching cane travel in schools and adult training centers across the country.

Like many LCB alumni, I have struggled to find words that can give adequate voice to Darick’s legacy. I could share stories of the adventures I experienced under his instruction, the lessons I learned about orienting myself and moving about in unfamiliar environments, and the confidence I gained through even (and especially) the scariest of those adventures. I could share how, as a man who happened not to be blind himself, Darick truly understood and conveyed his belief in blind people’s ability to travel safely and efficiently. But I cannot find the words to fully capture the impact he made, directly and indirectly, on hundreds of blind people through his students who became cane travel instructors themselves and passed his philosophy on to their own students. Instead, I will simply share his obituary, and a link to his writings for the Professional Development and Research Institute on Blindness (PDRIB), in the hope that his words will continue to educate and inspire.

Darick’s Blog Channel
Darick’s Obituary

ableism, The coming generation

Pushing Forward Against the Arm of Paternalism

This past Monday, I was heading to Baltimore to present at the biennial Leaders Assembly for one of my favorite clients, the Foundation for Jewish Camp.
Heading downstairs in my apartment building, I entered the elevator where another woman was standing near the button panel. Since I didn’t want to awkwardly bump her while reaching for the button panel, I asked her to press the lobby button for me. She did.

I cannot see elevator lights, so instead I listen to the beeps to determine which floor I am on. I entered on the fourth floor, so after the elevator descended and I heard it beep three times, I knew I was on the first (lobby) floor. Having lived in my current building for ten months, I had done this elevator ride hundreds of times, and was confident in my travels.

The door opened, but my elevator companion said “no, this isn’t the lobby.”
“Yes it is,” I countered, and walked toward the door.
“No, not the lobby,” she said again. She then tried to block my exit with her arm. Instinct took over, and I pushed forward as hard as I could. Luckily the interfering arm gave way. I stepped out of the elevator into the lobby. My companion continued down to the garage.

I am unsure why my elevator companion was so confident that I was exiting in the wrong place; perhaps there was a language barrier, perhaps the visual indicators from the elevator malfunctioned, or perhaps she was just distracted. In any case, she and I had different perceptions of the same reality. As it turned out, my perception was correct and hers was not. Rather than simply accepting this discrepancy, though, she felt it necessary to try to correct my “error” in a direct physical way. I couldn’t help but wonder if the same thing would have happened if I did not have a visible disability.

I traveled to Baltimore and got ready for my workshop, still feeling unsettled. Of course, I was rattled by the physical confrontation and the fear of being trapped in the elevator. I felt frustrated to have had my judgment and competence questioned. And, I was alarmed by my own internalized sense of doubt. When the elevator door first opened, part of me wondered if I really wasn’t in the lobby after all, and when I pushed out of the elevator, I half expected to be on the wrong floor. There was a part of me that wanted to acquiesce to her simply because she could see and I could not. Even in my own apartment building, where navigating is automatic and mindless, I doubted my own judgment.

Those of us who were born disabled find ourselves immersed in a world of people who sense, think, feel, speak, or move differently than we do. From the earliest age, we are taught to obey figures of authority who interact with the world in this different way. All too often, we are subjected to well-meaning interventions meant to convert our ways of sensing, thinking, feeling, speaking or moving into a more typical manner. Explicitly and implicitly, we learn that our ways of interacting aren’t as good or as right as the ways the rest of the world interacts. And, when a discrepancy of perception or judgment occurs, we may tend to follow that of the nondisabled person over our own. If we push forward, asserting the soundness of our judgment and our desire to move ahead, sometimes the well-meaning, but oppressive, arm comes up to stop us in our tracks. If this happens often enough, the natural response is just to stay put and stop pushing.

In Baltimore, I spoke with a small group of camp leaders about strategies to build an inclusive camper culture. I began by introducing my own story of being excluded from a Jewish summer camp. Then, we discussed tough situations involving reactions to disabilities. The workshop participants discussed how they allowed campers with disabilities to tell their own stories and reframe their peers’ questions about differences in positive terms. We talked about universal design and strategic staffing arrangements to support all campers without drawing extra attention to a camper with a disability. We talked about the balance between inclusion and disability community, and how we can foster disability pride in young people while still giving them the same opportunities as their peers without disabilities.

I rode home and grabbed the elevator up to my apartment (alone this time). By then, I was feeling a bit more optimistic about the future of my brothers and sisters with disabilities. At least some members of our society recognize the positive value of differences. These allies enable others to tell their own stories and trust their own perceptions without imposing nondisabled norms and expectations on them. Perhaps we will raise a new generation of disabled people who rarely, if ever, doubt their own convictions in the face of nondisabled challenge. Inevitably, young people with disabilities will encounter the interfering arms of others attempting to redirect their dreams. But I am confident that we can give them the strength to gently, but firmly, push their way past.

DeafBlindness, Guest post

Guest Post: Living as a Blind Person with Multiple Disabilities

Beginning today, I will be featuring a guest post from a different disabled person on the third Friday of each month. This month’s post comes from Reina Grosvalet. Reina Grosvalet is passionate about making life better for those with disabilities and chronic illnesses as she is a spokesperson for individuals with multiple impairments and rare disorders. She involves herself in occupations that directly relate to bettering the lives of those with disabilities by working as an accessibility subject matter expert, and she provides insight into living with a rare disorder by sharing her journey with Mitochondrial Disease. If you want to know more, follow her journey with Mitochondrial Disease at My Journey with Mito and check out her LinkedIn page at WaldorfPC
Living as a Blind Person with Multiple Disabilities: The difficulty of Getting Adequate Support

I have been blind most of my life, only blind and nothing more. I got taught in school using the resources that are in place for blind children, and I attended summer camps for the blind to learn important life skills. I even attended a school for the blind from ages eleven to eighteen. The resources given to me early in life and the training at the blind school truly did set me up for success. Upon graduation, I was ready to face the world and really make something of myself. I was armed with independent living skills, the knowledge about my civil rights and information about various technologies designed to help me function optimally as a blind person. All went well for a number of years until a neurometabolic condition, Mitochondrial Disease, caused additional disabilities. Sure, I did contend with health problems most of my life, however, life got real interesting when I started needing to depend on hearing aids and a wheelchair.

Now that I found myself living with multiple disabilities, there were new problems. When trying to get help with living as a blind person with two additional impairments, I quickly discovered how hard it was. When I first started relying on the use of a wheelchair for traveling long distances, I asked staff from training programs for the blind if it were possible to train a person who was blind and in a wheelchair, and I was told that they had never worked with anyone with such an impairment, thus they did not know how to help. Determined not to get discouraged, I taught myself some adaptive techniques by relying on the blindness training I already had and being creative and thinking out of the box. I also asked others whom I knew were blind wheelchair users for tips and tricks. All was fine for a while, and I was living my life to its fullest. Things got more complicated when I started losing more hearing.

I had a very mild hearing loss that came about when I was seventeen; however, it did not interfere with my ability to travel safely. Sure, I found it hard to hear some things, but it was more of an annoyance rather than a hinderance. But in May of last year, I lost more hearing, and the loss was worse by late summer. As a matter of fact, the hearing loss got so bad that I was almost hit by a car when crossing the street. Fortunately, I was able to get fit in with the audiologist and got a next day appointment.

I went to that appointment, and I got the hearing test. Thankfully, I was surrounded by good friends of mine because the news was not good. I was told I needed hearing aids, and I was given a pair that day. Yes, I shed tears because I knew that my life was forever changed.

For months, I tried finding people who were experienced with working with individuals who were blind, hearing impaired and in wheelchairs. I ran into many who had no experience, thus were not sure how to help. I finally found some mobility teachers who were willing to work with me. Two of them worked with only people who were blind wheelchair users but had never worked with those who were blind, hard of hearing and in a wheelchair. Nevertheless, they were willing to be adventurous and walk this journey with me. They were willing to do research to figure out how to help. It was a learning process for all involved. Then, colleagues put me in touch with a mobility instructor who has had experience in working with individuals who are blind, hard of hearing and in wheelchairs. This particular instructor has worked with veterans who have come home with all sorts of disabilities that they have developed from being at war.

Finally, things have started falling into place. Finally, I will have the help and support I need to continue to lead a fulfilling and productive life. It did take time, and I thought that I would never get there. I felt so discouraged, but I still kept fighting and still kept pressing on. I knew that in my heart that if I never gave up, I would eventually get the help and support that I needed to get where I wanted to be in life.

I will say that it really should not have been that hard for me to find support. I do realize that I had it better than many people because some have to wait years to find the right help, whereas I was able to find good help in a matter of months by networking. Even so, I have learned some important things by traveling this journey, and I want to take what I have learned and improve life for those who are blind with multiple impairments.

One thing that I propose that the blindness community can do to make life better for people who are blind with multiple disabilities is to equip training centers to work with people who are blind with a wide range of impairments. A one-size-fits-all standard approach must not be the only way, and each person can have a program tailored to meet his or her specific needs to ensure optimal independence and a good quality life. Additionally, I want to see all teachers for the blind be trained in working with people who are blind with multiple disabilities. This way, individuals of this particular population can access help quicker and get back to leading a productive and fulfilling life which will help loads with self-esteem and improve emotional and mental health. There will not be so much trouble getting the help because all teachers for the blind will already know what to do, thus will be able to address the special needs of this group. I also want to see those who are blind with multiple disabilities be represented more in the NFB. From what I have noticed walking on my own journey, individuals who are blind with multiple impairments are underrepresented overall, and many of us fall through the cracks. I believe that having a division in the NFB for those who are blind with multiple impairments will be a major help to our population because this division can focus on needs specific to those who are blind with multiple disabilities and can put time and effort towards improving the type of help and support that is received. The NFB is a powerful organization that has a good track record for ensuring the rights of blind people are protected, and this organization has certainly played a huge role in the successes I have gained throughout life. Since the NFB has made life so much better for the blind, I believe with my whole heart that they can also do the same for those who are blind with multiple impairments.

In the meantime, I will continue to be a spokesperson for those who are blind with multiple disabilities. I will speak out about the unique difficulties that we face, and I will provide my own insights into being part of this demographic. I hold onto the hope that one day, finding help and support will be much easier, and our needs will be met without having to fight so hard.

ableism

From Autistic Hoya: Examining Ableism in Language

Ableism is not a list of bad words. Language is *one* tool of an oppressive system. Being aware of language — for those of us who have the privilege of being able to change our language — can help us understand how pervasive ableism is. Ableism is systematic, institutional devaluing of bodies and minds deemed deviant, abnormal, defective, subhuman, less than. Ableism is *violence.*

Ableism is entrenched in our history and culture. One of the most insidious expressions of ableism comes in our everyday use of language. In this post from the blog Autistic Hoya, Lydia Brown identifies common words that have historic or contemporary links to ableism. Lydia Brown does not advocate a blanket ban on all of these terms; rather, Lydia suggests that we must be mindful of the connotations of the words we choose, particularly when communicating strong feelings. The post concludes with a list of alternative, non-ableist terms that can be substituted.
Autistic Hoya: Ableism/Language

Disabled voices, From the Disability Wisdom Community

From the Disability Wisdom Community: Is There a Disability Culture or Cultures?

This post features another discussion we had on the Disability Wisdom Discussion GroupA group member asked whether or not there is a such thing as disability culture, or impairment subcultures such as “blind culture” and “autistic culture.” The question generated a variety of opinions which underscore the complexity of the issue:

  • I intuitively feel like there is a blindness culture, although I’ve never quite been able to pin down what that means. I’ll give this some more thought.
  • I feel like there’s a blindness culture, like,an appreciation of non visual techniques and beauty. I have a hard time connecting with it a lot of the time.
  • First time I’ve heard of it.
  • so… Wherever there is a group of people, there is a culture or subculture. Families have their own subcultures. Companies have their own cultures. Groups of people who get together to discuss books have their own subcultures.If there are groups of blind people, then of course there is blind culture.

    I think it may be less easy to tease apart what makes it distinct, because unlike deaf culture there are no super easy differences to point to, but that doesnt mean its not there.

  • culture or subculture is the unique experiences and understanding within any group of people, so yes, it may not be as defined, but it exists.
  • I was always led to believe that something could only be a culture if it had its own language/form of communication. Braille doesn’t count because it is simply a different representation of an existing language. Under hat definition no, there’s no blindness culture & the sense of community we feel is a sub culture.
    Personally I’d. Say language is not necessary to define culture & communities can have their own cultures.
  • I am more open talking about blindness concerns around other blind people but I don’t think it is a culture. I think there may have been more of a blindness culture when most blind people attended a school for the blind but that hasn’t been the case for many years.
  • So culture is defined as a group having its own language, customs and religion. Since disability alone does not include these, I argue that we do not have a seperate culture. We are a part of whatever culture we live in. However, there is the disability experience, such as dealing with discrimination, using alternative tools/methods, lack of accessibility, the psychology of being disabled, etc. These are things that able bodied people don’t have to think about or deal with, except maybe the discrimination part. So while we live in the same culture as those around us, our experience can be different because of disability.
  • There is definitely autistic culture. It includes mores such as, respecting everyone, only 1person talking at a time, asking pronouns, stimming openly, asking before touching anyone, asking what someone is feeling and not relying on their expressions, giving people lots of space, being patient as people communicate, and being really honest. Autistic people are not offended by honesty the way other people are. If I ask you if you like my shirt and you say well it’s the color of bile that’s good to know I hadn’t noticed. I really wanted your opinion. I don’t ask if I don’t want to know things.
  • Personally, I do think that blind people have their own customs, which falls under the scope of being a culture. Saying your name instead of raising her hand to speak, announcing yourself when you enter a room in some places, some stims, and using technology bye unabashedly having your voiceover off silent or earbuds not constantly in your ears to hide the sound are part of the culture. They dislike of being touched without warning or permission is something that I think we share in common with the greater disability culture. I was pointed to the same very narrow definition that [group member] discussed while I was in middle or high school, but I personally do not agree with it. I think that culture has evolved to mean something very different in today’s day and age, and that definition just doesn’t suffice anymore.
  • If there were epileptic colonies, separate schools we had a culture. I’ve often wondered what happened to the former ‘program’ of an elementary school I had attended. The program used some now dated language. But I often thought it was ‘appropriate’ the elementary had sea paintings on the walls of that program when I had hydrocephalus (water on the brain) as one of my conditions. It made me feel beautiful as a little girl.
  • I think people often confuse the word community and culture. There are many many different communities inside a single culture. Just look at the United States. However, if you narrow down by culture, the number gets exponentially smaller. Same with disability. There are many communities full of people with disabilities, including this one. Culture wise, I don’t think so. In order to have culture, you need to have language, social norms, traditions, and many other things that I am forgetting right now. We, as Blind individuals, don’t have a language. Braille is just a code. It can be applied to any language. We do have slang, but every community has some sort of slang. Just look at the corporate or educational community as an example. We may have a few social norms, like don’t grab a guy dog that’s not yours, but in general we live by the same social norms as the rest of the different cultures that we are part of. And finally, we don’t have a lot of traditions that we share amongst each other. We may have a summer convention, but not everybody participates in that.
  • so if language determines a culture, for those who do not know this, but persons who are DeafBlind might use “ASL” but there is TASL, which is the tactile version, is it different from ASL yes, does it have its own unique signs and ways of conveying information in a tactile version, yes. And PT protactile, is its only expression of language too. Yes, I realize that the question was targeted towards the blind community, but as a deafblind person, not only do I have one foot in the blind community, but in the deaf community and a third in the deafblind community. so in essence DeafBlind is a sub community of the blind and deaf community. Yes, we have our own customs, our own norms, and so on.