An Interview with Sheryl Holt, Ph.D.

Sheryl Holt, Ph.D., is a career physical therapist who is currently completing her PhD in rehabilitation science while working as an assistant professor in the doctor of physical therapy program at Wheeling Jesuit University. She has lived with hemiplegic cerebral palsy while serving children with disability for over 30 years. Her manuscript, “What the medical model can learn from the case of the colorblind painter: A disability perspective" is featured in Volume 9, Issue 4 of the Review of Disability Studies. She gives us a chance to understand the journey of a painter, called Mr. I, and how his journey resulted in a transformation in his work and in his life. The following interview with Dr. Holt gives her the opportunity to expound on some of the ideas in her manuscript.    

                       

What role does passion play in Mr. I’s decision to continue to paint and in his ability to move past the difficulty of his condition?

Mr. I’s former passions in life had long ebbed before his new passions emerged. That suggests that there may have been an empty desert time in which other attributes of mind, heart, and soul paved the way for the return of passion. I cannot help but wonder if the absence of passion was not critical for its rebirth. I have heard some of my physical therapy patient’s make reference to experiences like this: because they had known deep sorrow, they believed they were able to find even deeper joys; because of their losses, they appreciated more dimensionally all that remained. After Mr. I did his post-stroke research, he began to meticulously integrate his findings into practice. In trial and error fashion, step by step, Mr. I’s outlook, dreams, and reasons for living began to find their shore, to display signs of celebration, hope, and pure delight. Passion for his art and his world view was reborn.

Done 4 weeks after the accident

      

Done just before the accident

  













 How does the story of Mr. I, the color blind painter, inspire you personally?

Mr. I's "leaden" world

Mr. I inspires me as a living narrative of resilience, perseverance, and mustard seed faith. I am drawn to him both with great curiosity and resonating admiration. I followed his series of insights as if I were color blind myself. His choices shook my expectations with a jolt of surprise, and the journey that followed was too compelling not to walk along.  The new sightedness of one fits with the emergent graces that self-impose upon one who does not know of easy balance and coordination; with the strengths that are borne in weakness, with the eternal streams found in things that fade quickly, the ephemeral. I am inspired by the way Mr. I doggedly set the stage for his own changes. He got to know himself better than any doctor, family member, or therapist could. Mr. I refused to let loss or emptiness define his status quo. He refused to let his impairments dominate him. He is every patient with whom I have worked as a physical therapist. He is me. Also, I deeply respect his calculated work of discovering shades of grey. Now when my ink jet runs low in color or black ink, I treasure the grayscales like never before. I may even study them. Mr. I inspires me to rethink my investment in the NOW, my depths of perception in what I see, and my willingness to continue to learn in ways both old and new. His story enables me to look beyond the apparent, not just in bonafide hues, but in life’s meanings.
 

What lesson can be taken from the story of Mr. I? 

Done 2 months after the accident

There are countless lessons that come to mind, but the lessons that I believe are most germane to the human spirit are those in which he teaches us about informed, empowered, self-respecting adaptation. His life changes the moment he considers his   “differences” not as deficits (about which he is ashamed or embarrassed) but a means to new assets. He connives and schemes ways to understand his color-blindness not only within his person, but also in his occupations, hobbies and the environments in which he works. He challenges himself to master his impairments, to know his limits, to cope with his losses, to dream. With his ever-growing self-knowledge and pragmatic awareness, he comes out of hiding and begins to live again, one grey-shade at a time. He takes the chance and begins to share his new gifts. In doing so, it is apparent that his motivation is not for the receipt of affirmation from others. It is a risk, a vulnerability. Those elements are parts of his new and curious strength. He follows his hunches, he believes in himself, he does not entrust his choices to other’s perceptions of normal for him. He considers his options. He rejects being fixed, in favor of embracing all he is, as is, no turning back.
He seeks truth within his own understandings; he is resourceful in building his evidence. He is patient on his path. 

Your study examines common assumptions of the medical model and challenges the   presumption of the normal curve. What is the most important finding or interpretation that excites you the most?

Done two years after the accident

In a nutshell, I reject a human normal curve that fails to accommodate all human experience beneath it. We humans are not numbers or statistics and where we fall in a statistical model is irrelevant to our value and our purposes in life. Getting to an understanding of the expanses of human experience as an international society has potential to change our language, our outlook, and our capacity to accept and appreciate others, different from ourselves. There is nothing normal about a normal curve. It is a fiction. I suppose that without the social mechanisms of norming, certain aspects of life would feel unmanageable, especially at the level of organizations, institutions, and cultures. Norms serve these structures with prediction and expectation, sometimes with seemingly necessary dictates to ensure what is needed for survival of the many. However, the onus is on humans everywhere to recognize when the normal curve does not serve outliers. This does not speak to validity or valuation. It is important to discern that especially within the medical model. Meeting people where they are will often be far from the canopy of the normal curve. The courage to scatter those held hostage by the curve would enlarge creativity, perceptions, and potentials. If you ask Mr. I, I am guessing he’d say that the risk is worth calculating. Like him, when you are ready to start pushing the bounds of normal, the journey will be your own. I agree with Mr. I, that any other journey becomes meaningless, repugnant, and distant to what makes you who you are. It doesn’t have to make life better, just truer to the sojourner.

                                            

My Pet: Trained

Somebody Else's Snarling Pet Dog

My Trained Pet "Presto" Relaxing in the Grass

A recent article in the Santa Rosa Press Democrat was titled “Fake Service Dogs Anger Owners of Trained Pets”.

(http://www.pressdemocrat.com/article/20130807/articles/130809625)

As the proud partner of a “Trained Pet” named Presto, please ignore the head banging. How many times have I snarled, “He is not a PET,” to an airline reservationist?  I was dismayed by this news. That is to say, I was dismayed that the issue made the news. I was not looking forward to another day of explaining myself as I went about my daily activities with my Pet (Trained) by my side.

Most of us who use Guide Dogs or Service Dogs have experienced access challenges of one sort or another. I have had cab drivers holler, “No mutts lady!” as they screech away from the curb when I attempt to hop in. I have had bus drivers refuse to move their buses and customer service people refuse to serve me. Mothers drag their small children towards Presto on a regular basis, cooing, “Loooook, doggie, “ and offering little hands as a succulent treat that fortunately Presto ignores (unless they’ve been eating bacon).

Usually (with the possible exception of cab drivers), an explanation that my dog is a “Service Dog” will get the bus moving. But recently, publicity about “fake service dogs” have brought out the worst in people. For example, a couple of weeks ago I boarded the campus shuttle with Presto only to be stopped at the door by the driver. “You got papers for that dog?” she growled. I pointed to his vest and gave my Service Dog spheel. “I need papers,” said the driver again. I explained about my disability. I told the driver about the work Presto does for me. I explained about the ADA (I was on a roll) but the driver would not give up. She did finally move the bus, but she publically humiliated me during the entire ride by continuing to assert my illegitimacy in a loud voice and arranging over the radio for security to meet me upon my disembarkment.  I am sure I was the most exciting thing that had happened to her all month. There had recently been a news story about “fake service dogs” in our local paper. And I paid for it dearly.

            After I spotted the “Trained Pets” story I became curious. Just how many people out there are actually trying to scam us into believing their mutts are the genuine article? A search for “fake service dogs” led to little data but some interesting commentary.

According to a blog called “Life with Dogs”:

Image from website where "service dog" ID can be ordered. 

“The New York Post reported that many New Yorkers have been using fake ‘service dog’ tags on their pets so they can take them wherever they want. Dog owners in New York have been purchasing fake tags, vests, patches and certificates on the internet. These New Yorkers put these tags on their dogs so they can take them into restaurants, grocery stores, coffee shops, clubs and other business.” (http://www.lifewithdogs.tv/2013/08/people-using-fake-service-dog-tags/)

What is the matter with these people? Why on earth would anyone want to take their dog to the grocery store? It’s like taking a child to the grocery store, distractions around every corner. And a club?? What dog would not go absolutely insane inside a club with blaring music and stupid dancing drunk people? Cafe’s, coffee shops and restaurants, I guess if you’re a Francophile. But honestly, if Presto did not perform a functional service for me, I would leave him at home asleep on my couch, chewing on one of my daughter’s Barbie shoes, where he belongs.

Apparently, some people are so into their dogs that they will break the law to go everywhere with them. Service Dogs Central has an article on “Spotting Fake Certification” with a long list of online sites where you can purchase phony Service Dog certification and equipment. They also feature “scary” verbiage from these sites including (very scary) tidbits such as:

"If your dog exhibits occasional nipping, Service Dog Certification of America recommends muzzling." (http://servicedogcentral.org/content/node/509)

Dog eating waffle off plate in cafe.

Today a CBS news story about fake service dogs made the national news:

“It's an easy law to break, and dog cheats do. By strapping a vest or backpack that says ‘service animal’ to their pet, anyone can go in stores and restaurants where other dogs are banned, creating growing problems for the disabled community and business owners and leading to calls for better identifying the real deal.”(http://www.cbsnews.com/8301-204_162-57607109/illegal-fake-service-dogs-pose-dangers-to-many/)

Dog sitting on couch with feathers from pillow all around.

As I stood in line at Starbucks with Presto, waiting to order my afternoon-slump latte, not one but two little old ladies gave me the stink eye. “Cheater,” their looks said. I gave them the stink eye right back, but it did bother me. I have the vest, the leash, the ID tag and the ID card, all proclaiming that Presto is a genuine Service Dog.  He even looks like a service dog (Golden Retriever with impeccable manners). What do I need to do to “prove it” to these people? Just because Lazy Larry doesn’t want to leave his dog at home so he doesn’t have to worry about his carpet shouldn’t mean that someone with a disability has to submit a blood test to use public transportation with their Service Dog. How about prosecuting people who sell fake ID cards? How about “Three Piddles and You’re Out”? 

An Interview With Dr. Steven Brown

Dr. Steven Brown, Professor at the Center on Disability Studies at the University of Hawaii, Manoa.

You mentioned in your book Surprised to Be Standing that being diagnosed with Gaucher’s Disease and realizing your physical limitation when you were a child made you feel that your life changed forever. Please share with us some life changing events that followed?  

 

This is a bit difficult to answer in short form, since I have already written a lot about my life in 2 books and in other publications. However, here are 2:

1.      When I first stood in front of a classroom as a Teaching Assistant in the mid-1970s, I realized that students were waiting for me to take the lead. And I began to do just that. Later, I realized this was the beginning of ending an intense shyness and learning to put myself “out there” in many different situations.

2.      In 1982, a year after earning my doctorate, I was hired, over the phone to write a history of a private company in Oklahoma. When my contact learned I used crutches, the conversation changed. Eventually I was not hired and I was told that they did not think someone who used crutches could do the research and write a book. As I have often written about this situation, I became “radicalized overnight” as a disability advocate. And thus began my journey working in disability rights organizations, which has led to many other amazing experiences and opportunities. 

How far are we in terms of creating a disability mythology? 

I talked and wrote about “disability mythology” in the early 1990s. For me, this was a way to get people thinking about “disability culture.” So my response to this question would more accurately be where are we in the evolution of Disability Culture. And for that, there could be many responses. 

Here’s one:

When I, and a few others, began talking about Disability Culture in the 1980s and early 1990s, there was frequently an argument about whether such a culture existed. But now you can find the phrase “Disability Culture” in books, conference titles and programs; journal articles; academic courses; organizations; and many other places. You can also enter the search term, “disability culture” and receive thousands to millions of returns, depending on the day. So, we have come a long way in a relatively short time. And it continues to evolve, which is, for me, the most exciting part.

Would you like to revise your definition of Disability Culture* in a 1996 issue of Mainstream Magazine? Please explain.

*People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives and our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity. We are who we are: we are people with disabilities.

I have revisited this definition many times over the years and asked other people about it as well. I have wondered at times about revising it, but it still seems to work well, so no I don’t see a need to revise it. I do, however, use other definitions from other people as well, when I discuss the concept and definition of disability culture. For more on definitions, and links to other resources, please see: www.instituteondisabilityculture.org

How do you like teaching online course “Disability and Culture: From Homer to Hip Hop?” and what have you learned from your students?

I love it. “Disability History and Culture: From Homer to Hip” is a course I created, so I’m quite attached to it. When it began, about 2-3 years ago, it was somewhat difficult to find resources for student assignments. But in the short time that I’ve been teaching it, resources have expanded widely and now there is more than can be used in a semester. 

From my students, I learn many things. Among them are: how their lives have impacted what they take away and contribute to the course; how their cultural backgrounds contribute to the way they participate in discussions; that they come up with questions I would not think about asking; and how many students still know so very little about disability and disability issues—but have a great desire to know and wonder why they haven’t been previously exposed to it, especially in primary and secondary schools.

I have also learned from students, as well as many others, about a variety or resources that are available and that continue to be created.

What do you love the most about your job?

Teaching; working with great colleagues and being encouraged to be innovative; and making a difference in people’s lives.

What Ever Happened to Mary Ingalls?

What Ever Happened to Mary Ingalls?

Megan A. Conway, Ph.D.

RDS Managing Editor

Photo of Mary Ingalls in Real Life

Photo of Actress Who Plays Mary Ingalls on TV

Since this issue features a forum on the family, I knew that I could easily write an editorial focused on my own family experiences. But then I realized that many of my editorials focus on my family! After all, my family is the most important thing in my life. Who wants to read another editorial about the exploits of my eight-year-old daughter? So instead I am going to focus on another family. They are the Ingalls family, and most interestingly, Mary Ingalls, the blind sister of the book and American TV show’s main protagonist, Laura Ingalls.

For those of you unfamiliar with the American classic saga of the Ingalls family, their journey by covered wagon in the 1870’s from the state of Wisconsin, through Kansas, Minnesota and finally into South Dakota, is told rather charmingly in the children’s series, The Little House Books, by Laura Ingalls Wilder. Laura wrote the fictionalized story of her family’s true journey when she was an older adult. I devoured these books as a child, and even lived their stories of pioneer hardship, family love and adventure in play with my friends. In the 1970’s Michael Landon directed and starred in the TV series, Little House on the Prairie, which was a big hit for family television and ran for nine seasons. The TV series diverges from the books in countless ways, but the primary themes of family and hardship remain, with the appearance of familiar characters from the books including Laura, her “Pa” and “Ma”, and her three sisters: Mary, Carrie and Grace.

            In real-life, the book, and the TV series, Mary becomes blind as a teenager, due to a then-unidentified illness that for many years was said to be Scarlet Fever but that more recently is thought to have been Meningitis. In the book, and presumably in real life, blindness is for Mary the end of all expectations that she will realize her hopes of becoming a teacher or of having a family. Laura’s descriptions of Mary in the Little House books are of someone who suffers her blindness without complaint, always “patient and brave”, who at first spends days upon end in a rocking chair in the corner, but who gradually learns to contribute to household chores and childcare.

            As told in the Little House books and according to Wikipedia (http://en.wikipedia.org/wiki/Mary_Ingalls) although Mary does have the opportunity to attend a school for the blind in Iowa where she is educated and learns vocational and housekeeping skills, she lives with her parents or sisters for her entire life and never has a family of her own. Her primary vocations include involvement in church life with her mother, and making fly masks for horses to help make ends meet after her father dies.

As a child I never noticed the sad plight of Mary, other than to sympathize with her blindness in a general way. I never connected her blindness to mine, or noticed any difference between her sheltered life and my life of “mainstream” schools, wandering the neighborhoods of San Francisco with friends, and dreaming of a career as a movie star (or lawyer if that didn’t work out). As an adult, Mary’s situation seems to me to be dreary and representative of the constraints that disability has placed on people of the past, and unfortunately, on people of the present. Why could not Mary have had a family of her own and pursued a career as a teacher, even if “only” as a teacher of others who were blind?

Apparently the creators of the Little House on the Prairie TV series thought the same. In the concluding episode of Season Three, Mary is slowly going blind. In the book By the Shores of Silver Lake, Laura writes, “All that long time, week after week, when she could still see a little, but less every day, [Mary] had never cried” (p. 2).   In the TV episode, we counted no less than seven bouts of tears in the one-hour episode, from each of Mary, Pa, Ma, Laura, friends and neighbors. In any case, in this final episode, before she became blind Mary was being courted by a neighbor boy but her blindness puts an end to that (and not without a choice scene featuring Mary screaming at the hapless lad, “Get out of here, just get out!” and then, you guessed it, bursting into tears). So Mary is shipped off to a school for the blind, where she seemingly spends about a month (but actually spent eight years). There she meets her teacher “Adam”, who it turns out is very young and very handsome (of course she can’t see him but we sure can). Adam teaches Mary some important life skill lessons (“You will learn to eat with a fork!”) and apparently some other skills as well, as Mary and Adam fall in love and the Season ends with plans for their future together helping other blind people.

I definitely prefer the TV version of Mary’s prospects.  According to a website devoted to the history of the Iowa Braille School (http://www.iowa-braille.k12.ia.us/vnews/display.v/ART/4921ebc684123):  “All social interaction, in any event, was done under the close supervision of a dormitory officer or teacher. Many deep friendships developed through the planned social activities, some of which resulted in marriage after graduation. Mary, however, did not choose to marry.” The real Mary Ingalls left a much smaller mark on the world than her TV persona. Did she ever sneak away to kiss a sweetheart when the dorm mother wasn’t looking? Did she truly live a life of pious spinsterhood as the limited records about her would suggest? Did she have a choice? Mary’s place as a family member, both in the home and without, was seemingly dictated by her blindness rather than informed by it. I wish history indicated otherwise. 

Gravestone Reading "Daughter, Mary Ingalls, 1865-1938"