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Thursday, December 12, 2013

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”.
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.” (

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." (

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.”(

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”

Thursday, November 7, 2013

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:

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.

Monday, September 9, 2013

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 ( 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 (  “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"

Monday, June 3, 2013

Do I have to like it?

"Almost cut my hair
It happened just the other day
It was getting kind of long
I could have said it was in my way

But I didn't and I wonder why
I feel like letting my freak flag fly
And I feel like I owe it to someone..."
(Crosby, Stills, Nash and Young)

One of the actual problems of being an enthusiastic, “I am disabled now hear me roar” type of Crip is that sometimes being disabled is not very sexy. How to respond when someone close to you says, “But I don’t see you as being disabled. I just see you as yourself.” This is a lovely sentiment during, say, a romantic dinner on a cruise ship, but not so lovely when you fall on your face disembarking from the ship because your special someone forgets that you are blind. How can you respond with enthusiasm in the first instance, when you are glad to be seen as yourself in all of your loveliness, and yet still expect people to remember that there are times when you want to embrace your Disabled identity, or simply need their assistance?

I am not talking about the complete strangers who approach you with, “Aw shucks, you don’t look or act disabled.” These people need to reflect seriously on their prejudices and assumptions and don’t really warrant the space of an entire column. What interests me is the question of, are there times in our daily lives when being Disabled is just not relevant? If I assert myself in one instance as “Loud and Proud,” am I being hypocritical if the next moment I “Just Wanna Be Me” (and that doesn’t include my impairments)?

I remember the first time I felt like I was part of a community of people with disabilities. It was the summer between 6th and 7th grade, and I was attending, for the first time, an Easter Seals sleep-away camp. Up to that point, I don’t even remember actually meeting another person with a disability, and my disability had frankly just been a source of frustration and oppression. My mother and I pulled up to the cabins on the shores of the Hood Canal in Northern Washington State, and there was a group of kids with various disabilities playing an enthusiastic game of volleyball with lots of cheering and humorous put downs. I was like, “Whoa, this is different.”  The whole week was like that. I was finally among my peers and to be a member you had to have a disability, which entitled you to forget that your disability existed. Numerous other experiences in my youth and young adulthood encouraged me to simultaneously see my disability as “something to be proud of” and “something that doesn’t matter.”

I also remember the first disability studies text I ever read, the oft-cited Claiming Disability by Simi Linton (1998), a book that seemed radical for a twenty-something who had never read the word “freak” with relish. One memorable passage:

“We have come out not with brown woolen lap robes over our withered legs or dark glasses over our pale eyes but in shorts and sandals...We are, as Crosby, Stills and Nash told their Woodstock audience, letting our ‘freak flags fly’...”(pg. 3).

Fuzzy photo of "disabled flag" from American disability rights movement.

These days, as a faculty of Disability Studies, I spend my days thinking about, writing about, and teaching about disability as a positive identity. I am often called upon to assert myself as Disabled in order to protect my interests. In my profession, and sometimes in my daily life, being Disabled is a badge of honor. But the fact is that I don’t really spend very much time on any given day thinking about my disability identity. Most of the time I am thinking about what I will cook for dinner, whether or not it will rain today, whether or not we have the money to go on vacation this summer, how I will get my daughter to do her homework, and how cute I (hope I) look in my new pink Ellen Tracy top and LA Girl almost-black skinny cropped jeans.

In the poem, “Beauty and Variations” (Disability Studies Reader, L. Davis, Ed., 2013, pg. 529), Kenny Fries writes: “What is beautiful? Who decides? Can the laws of nature be defied?”

Photo of swimmer with a disability diving.

Is it o.k. to “like” it when someone says “I don’t think of you as being disabled”? Just as on Facebook, there doesn’t seem to be a way to “sort of like it.” I think that I have spent so much time trying to make good of my disability that I have forgotten that “identity” is just a way of projecting ourselves in a definable way. It doesn’t mean that others who are close to us can’t see how complex we really are.

Wednesday, January 16, 2013

Weak and Lame: Parenting in the 21st Century

Photo above of Megan Conway, and her daughter who is wearing a Santa hat.

Weak and Lame: Parenting in the 21st Century

Megan A. Conway, Ph.D.
RDS Managing Editor

It's not often that a statistical report robs me of my sleep for a week, but that's exactly what happened when the National Council on Disability (NCD) released its September 2012 report, Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and their Children ( The long-overdue report includes findings such as:

The child welfare system is ill-equipped to support parents with disabilities and their families, resulting in disproportionately high rates of involvement with child welfare services and devastatingly high rates of parents with disabilities losing their parental rights,” and

Parents with disabilities who are engaged in custody or visitation disputes in the family law system regularly encounter discriminatory practices.”

In my 2 AM weariness and bleariness, I could hear the FBI pounding on my door, demanding the relinquishment of my seven-year-old daughter. “But officers,” I would cry, “I carried her for nine months in my womb just like any other woman!”

“That is no matter, you are not woman enough.”

 “I nursed her and bathed her and held her when she cried!”

“That is no matter, you are not woman enough.”

“I fed her, I clothed her, I protected her and loved her!”

“That is no matter, you are not woman enough.”

“But I agonized over sending her to public school versus private school…and the local public school is really rather good…”

"You sent your child to public school? Officers, take this child away!"
Fortunately this is the point where my imagination realizes it is ridiculous, waking me from my trance. But realities are so much more sobering.

From the NCD report:

Parents with disabilities and their children are overly, and often inappropriately, referred to child welfare services and, once involved, are permanently separated at disproportionately high rates. The children of parents with disabilities are removed at disproportionately high rates owing to a number of factors, including…state statutes that include disability as grounds for termination of parental rights…” and

“…[There are] inconsistent state laws, many that overtly discriminate against parents with disabilities, others that fail to protect them from unsupported allegations that they are unfit or create a detrimental impact on their children solely on the basis of presumption or speculation regarding the parental disability…”

What if my husband’s habit of leaving his socks scattered all over the house and my habit of rearranging his belongings finally get to be too much and we should decide to part ways? Would I lose custody of my daughter because my husband can drive and I cannot? What if someone observes my daughter taking my arm as we approach the sidewalk curb, saying, “Curb, Mommy,” and decides my daughter has too much responsibility for a seven-year-old? What if my tolerance of my daughter's current liking for polka-dot pants paired with striped shirts is interpreted as negligence rather than parental indulgence?

Observing interactions between parents and their children has always amused me. Since my daughter's birth, I have had ample opportunity to indulge myself in this interest. The struggles of the 21st-century parent never cease to amaze me. My daughter has a friend, “Amy,” who we invited to dinner. I asked Amy’s mother the obligatory, “Does Amy have any dietary restrictions?” I received the following instructions:

Amy will not eat tomatoes of any kind, cooked mushroom (raw is fine), pasta (except the bow shaped ones), brown rice, peanut butter and jelly sandwiches (unless the peanut butter and jelly are served on separate pieces of bread that are not stuck together), cheese (she does like string cheese), meat that is not shaped like a bunny rabbit, nor mashed, baked or boiled potatoes (french fries :-).”

 Cartoon above features scene at cafe, family sitting in booth. Waitress: and on the kids menu we have cranky pants french toast or unhappy face pancakes both come with a random tantrum fruit cup.

Another friend, “Blaire,” has a flair for the dramatic. One evening as we sat enjoying a glass of wine with Blaire’s parents, Blaire led my daughter into the living room, both stark naked and giggling, “We are the forest fairies.” Blaire’s mother jumped to her feet and said, “Oh how cute! Let me get my camera…”

There is a darling little boy in my daughter’s class who insists on Kung-Fu-ing every individual who crosses his path. His father explains with a smile to the individual who is grimacing and holding their shins, “Oh, he doesn't mean it really. We’re trying to get him to be a bit more assertive, so he won't turn out to be a homosexual, ha, ha.”

Then there is “Frank,” who just last week, with the unfortunate perception of all bullies, told my daughter within earshot of her friends, “Your Mommy is weak and lame!” My daughter came home from school indignant, telling me what Frank had said. After I had given the maternal pep talk about how “you and I are stronger than Frank any day of the week,” and also checked the web for martial arts studios in our neighborhood, I reflected, “How on earth does a seven-year-old already know how to objectify and demean a person with a disability?” And a scary thought, “What if little Frank becomes Judge Frank one day?

“Mommy,” said my daughter later, “When Frank says mean things about me it hurts my feelings. But when he says mean things about you, it hurts me even more.”

My daughter has compassion, the capacity to love and a sense of responsibility. Where did I go wrong?