This is posed here as a serious question; an invitation to PWDs to give their thoughts and engage in discussion. But I’ll start things off with my own observations on the matter.

Firstly, one might ask exactly who is making the assertion that PWDs are insulted and disrespected. One may reasonably assume it to be PWDs making the assertion. However, this turns out most usually NOT to be the case. I tend to engage pretty much anyone in discussion about BIID regardless of their stated opinion, excepting only those whose linguistic palette is limited to vulgarities. So I like to ask people how they have formed their opinions, in as non-confrontational way as I can muster, in order better to understand. In the case of this particular assertion under discussion, I have been motivated to ask “Have you actually had someone with a disability express their feelings about BIID to you?” It turns out that many such people do not have ANY friends or family with disabilities! Why so many ABs are scared to have friends with disabilities is an interesting question for another time, but the point is to be aware of firmly held assertions that are actually coming from a place of profound ignorance. Bear in mind however that such assertions are not automatically refuted just because they are made by someone who is clueless. The question remains as to what PWDs actually think.

It may seem obvious here, but I’ll just state that PWDs DO think for themselves and are not in need of some condescending AB telling them what they are supposed to think. And I’ll state, equally obviously, that PWDs are different from each other and therefore have different thoughts. Supposing them all to think the same way is just as condescending. Be careful what you think you know about someone based on their apparent circumstance. A common “argument” I hear is “Anybody with paraplegia would give anything to walk again.” Rubbish! Such blanket statements are always suspicious. One of my new friends, who became accidentally paraplegic at age 10, told me it was the best thing that ever happened to him.

In the two years since becoming completely open about BIID, I have received hundreds of private messages from PWDs offering their opinions. With such a large sample size it is tempting to do statistics and present the results as a scientific survey. However, such an approach is fundamentally flawed due to self-selection bias. How is one to determine the relationship between someone’s opinion and their motivation for writing to me? Consequently I shall present my observations as being nothing more than anecdotal, albeit based on hundreds of one on one conversations.

My first observation is that two thirds of strangers with disabilities who write to me in connection with BIID are quite positive from the outset. By this I mean they are immediately accepting and understanding; they make overtures of friendship and quickly become emotionally supportive.

One third of the sample respond initially with negativity. I try to engage almost all of these in serious dialog about the subject. Of those who are willing to engage in dialog, I am able to facilitate a change to a positive outlook regarding BIID in 75% to 80% of them. This high percentage surprises me, as does the rapidity with which it usually occurs. Am I that persuasive? Actually I don’t believe it is a matter of my logical faculties. One of my talents is to make myself disarmingly vulnerable to just about anybody. This allows people to drop their guard and I am not perceived as a hostile. They see ME. And then they have a motivation to understand; and that is all that is needed. Quite a few of those whose minds I have helped change become close and supportive friends. One might never have imagined this to be possible based on their first communications with me. It helps a LOT to refrain from lashing back at someone who seems angry at you. It is much more effective for them to come to a place of offering apologies on their own accord. NEVER demand an apology!

Do not interpret what I say as implying that no PWDs feel insulted or disrespected by those with BIID. Some DO express this; just not a majority in my own experience. The next question is WHY do they feel this way? I have my observations here too, based on many conversations.

When I look at pictures of hundreds of PWDs who have been supportive of my BIID, I see something in common. I see happy smiling faces. I see people who are accepting of their own disabilities, people who are loved and are able to love, people who are not constantly angry. This in no way implies that they are immune from bad days, depression and suicidality. I am very responsive to this. It is both an obligation and a joy to be emotionally supportive of those who support me.

As for those who are negative, try to remember that most are NOT truly angry about BIID and they are NOT truly angry at you. Approach them with compassion and try to understand where they are at. They may be angry about being disabled. They may be angry that their life is not what they hoped it would be. They may be angry at the way PWDs are treated. Some PWDs take only weeks of being consumed by this phase; others take decades. It can come and go. Try to empathise. Feel what they feel. Acknowledge and validate what they feel. You CAN help (some of) them. By helping them you help everyone with BIID, because their own self acceptance is linked to their acceptance of those with BIID.

This is just one person’s experience of what PWDs think about BIID. I hope to hear a lot more of what others think, from their various perspectives.

So why the death in BIID website activity? Could it be that now that we know what we have and know that we’re not alone we’ve all found ways to cope and get on with our lives? Do we have a “Yeah, I have it- so what?” attitude about BIID? Or is it possible that now because more of the general public are informed, are revolted by us, causing us to hide even more than we did in the past?

I admire Chloe for her lack of shame and guilt (why should there be either to begin with?) and her willingness to come forth about BIID publicly. I’m also slightly jealous of her fame. One thing that I didn’t care for is the initial media treatment of her, and how they tried their best to make her a sideshow spectacle. She was open and honest, but perhaps the venue wasn’t optimal for such a subject. Despite that, her demeanor was impeccable- but displayed to a hostile audience for their lurid pleasure.

I consider myself to be open about my own experiences with BIID. I’ve told all my family, close friends, and have even confided in my church pastors. It’s funny that I’ve never gotten the responses that I expected- nobody has yet called me “lower than dirt”. I was nervous when I told them, actually didn’t want to say anything to them about it whatsoever, but in return for my confession to them I more or less received acknowledgement, acceptance, and their own revelations of deep personal issues. It seems that everyone has some sort of baggage to conceal. To those people I confided in, I felt it necessary to reveal myself in order to have an honest friendship- it seems that it worked.

I haven’t gotten any public exposure other than an ABC news article on the web. I was also approached by National Geographic and the Anderson Cooper show- but Chloe won out. I’m an introvert by nature, so I probably don’t present the same “presence” as Chloe and the production professionals are trained to detect that shortcoming. I really would like to be there to give some public support for Chloe instead of her bearing the whole weight of being our public spokesperson. Beside that- I bet she’d be a great deal of fun at cocktail hour- I’d love to meet her face to face!

I have to give kudos to Dr. First, Chloe, and Doug Fabrizio at NPR for the recent radio show they broadcasted about BIID. Stellar! Finally a combination of medical authority and personal experiences were presented, and I was blown away. I participated in Dr. First’s second study, and so much of what he said applied to me personally. Chloe hit a lot of personal chords as well. All I can say is that this is the first production of any kind where I identified so fully. The show was absolutely amazing.

But I still wonder about all the lack of activity on the web. I wondered if all that needed to be said on the subject of BIID was said, and now it’s a dead issue. Well, I still have it, I still cope with it, I’m still frustrated by it, and I don’t see that my life on Earth will ever be without it. The radio program refreshed my hope for resolution, and it was good to hear that the issue isn’t completely dead.

Professor Michael First, the world expert on BIID, and myself, as the medical specimen, are scheduled to be the guests on RadioWest, National Public Radio’s hour long live conversation program from Salt Lake City.

Date: Tuesday October 29th, 2013

Mountain Time: Live at 11 am, repeat at 7 pm.

Host: Doug Fabrizio

Topic: Body Integrity Identity Disorder

Radio Station: KUER 90.1 FM

Website: radiowest.kuer.org

Due to scheduling conflict Michael First’s segment will be pre-recorded. I shall be live, and fielding live telephone calls from listeners.

I shall also be featured on the accompanying VideoWest program.

PC language goes into excessive lengths not to offend anybody. Making somebody uncomfortable is the greatest sin. It’s scared of stereotyping. Blonde jokes are out. Three little piggies tale is out in order not to offend all those who consider pork unclean. Reading PC fairy tales is hilarious because let’s face it, fairy tales are all about black and white perception of the world. But that kind of perception is totally unacceptable. People are not white or black, people are Caucasian or African-American. Only those terms often don’t hold. Why would we call somebody whose family lived in America for two or three centuries by where they came from while we are not calling Arnold Austrian-American even though he is rather new to USA? And how do you call white South Africans when they move to USA? Aren’t they African-American after all? Oops?

PC destroys humour because most humour is based on traits of certain groups. Have you ever read John Callahan’s jokes? They are great. They are not PC. They are mainly hated by able-bodied folks and mainly enjoyed by people with disabilities. Callahan laughed at the absurdities of our lives. He laughed at stupid people. One of his best cartoons is a picture of the door of spinal cord injury clinic with its sign: Standing room only.

On the other hand, there is people first language. PFL tries to see a person first, disability second. It says a person HAS a disability, not that a person IS a disability. There is a huge difference.  It shows what we have in common first (being a person). It doesn’t use the words that have a negative connotation out of respect, not out of political correctness. Respect is what drives PFL. Fear of making others uncomfortable is what drives PC.

Now comes the tricky part. Most people will agree that an AB shouldn’t call a wheelchair user by names like crip or gimp. There is a clear negative connotation there. Words hurt. Words do hurt when used wrongly. Just thing of the R-word. But there is no consensus within the disability community itself what is acceptable for people with disabilities (PWDs) to call themselves and their friends. Can a para call himself a gimp? Can he call his friend a gimp? Personally, I think it depends on how the person feels about it. And that’s what should be respected. I can call myself lazy but only my very close friends could call me that. You can’t because it will hurt my feelings. When the word gimp is used by wheelchair users, it doesn’t carry the bad connotation. That’s why it can be used in certain circles.

Words have power. They can hurt us or they can lift us. So when we are using words describing a person with disability, we need to keep that in mind. Are we showing the other respect for who he or she is? Or are we using the word in order to hurt or to stereotype the person by the disability? That’s why using PFL is an important step for integration and tearing down barriers. So we see the person first. The person who is funny, has talents and hobbies, is a good parent, a great friend, a good worker and who just happens to use a wheelchair or have some disability.

So, I would urge you, use people first language whenever you can, especially with able-bodied folks. But as to what you are comfortable to call yourself, you are your own judge and I shall respect it.

First, let’s clear the terminology. There is a parking space, the spot where you actually park your car. And then there is an access aisle. That is the striped space next to the parking space. One cannot have one without the other.

The new 2010 standards changed the original width of parking spaces. The new standard says that car spaces shall be a minimum of 96 inches (244 cm) wide, that is 8 ft. Van spaces shall be 132 inches (335 cm) wide, that is 11 ft. The access aisle for both car and van parking spaces shall be 60 inches (152 cm) minimum wide, that is 5 ft.

The older standard for van parking space of 96 inches minimum width with access aisle of 96 inches minimum width is acceptable.

The new requirements for van parking spaces should make it easier for van users, hopefully.

Two parking spaces can share one access aisle. Accessible parking spaces should be the closest ones to the business for which they serve.

The access aisle has to connect to accessible route. What it means is that from the access aisle there has to be a curb cut to the sidewalk. Yet the curb cut or a ramp must not interfere with the access aisle. The access aisle and parking space may not have  a slope exceeding 1:48. The ramp can be as steep as 1:12, thus if put within the access isle would prevent a wheelchair user to safely transfer as the wheelchair couldn’t sit flat there. (Unfortunately you will see a ramp within an access aisle often as it seems to be a quicker and cheaper solution than cutting a curb cut into a sidewalk.)

Access aisles need to be clearly marked as to discourage from parking in them. Putting up a cement pole is a very effective way.

Access aisles can be both to the left or to the right of the vehicle. One is expected to be able to back into the parking spot if needed. There is only one exception to the rule: where the parking is diagonal (angled), the access aisle for a van has to be on the passenger side.

Parking spaces identification signs with the international symbol should be a minimum of 60 inches high from the ground. Spaces that are van accessible need to be marked “van accessible”. Even if  there isn’t a painted sign on the ground but there is a sign on the wall or a pole, you need a permit.

There has to be at least one accessible parking space for every 25 parking spots. One out of six accessible spaces must be van accessible. If only one space is accessible, it has to be van accessible.

So the theory goes. You can read it on the Access Board site.

Now we all know that theory is one thing, practice is another. The rules are violated both by people without a parking permit (by simply using the spaces illegally) and by people with a permit. Just because you have a parking placard doesn’t mean that you don’t have to follow the rules. One of the common violations is that the space is not used by the permit holder. You use your grandma’s permit while you don’t have one. Not legal. You bring your grandma along and let her sit in the car while you go shopping. Not legal. Let’s say you have a permit. You park partly in the access aisle. Not legal. I see that all the time, people parked half way in the access aisle. If a wheelchair user needs the other spot, he can’t use it. Quite possibly you are also blocking the curb cut. Possibly the only curb cut around. You might have blocked the access to the already parked car on the other side of the aisle. The person might not be able to get back in. Or he/she will get in at your expense – some scrapes on your car because there was no way for that person to get in one’s car without some damage to your car (yes, an angry wheelchair user will do it and it’s all your fault, not his). And yes, you can get a fine for parking in the access aisle even if you have a permit.

So, let’s repeat it again. Never, ever, park in the access aisle! Not with a motorcycle, not with your car for which you have a permit. Just don’t do it!

When you know these rules and regulations, you will be surprised how little compliance there is. Parking spaces without an access aisle are quite common. Personally, I would advocate for wheelchair users only spaces with access aisle and non-wheelchair users spaces without the access aisle. My experience is that most accessible spaces are used by non-wheelchair users. Heart and lung issues, obesity, and arthritis being probably the most common reasons for a permit and its use.  But the ADA regulations don’t distinguish so the rules need to be followed.

You will see a lot of spaces that are marked “van accessible”, yet are only car accessible. You will see no path of travel from your parking space to the store. Or the parking will be on a steep slope.

So here you have the knowledge. Use it well.

If you are interested, please contact us and we will send you an email address for Dr. Kim. Or go to the Forum section where you can find it also.

Here is Hyung Kim’s announcement:

We found Three Candidate Genes for BIID

Hyung-Goo Kim, who is a molecular geneticist and a research fellow at Dr. Lawrence Layman’s lab at Georgia Health Sciences University in United States, has been performing a genetic study to identify disease genes involved in BIID. So far this lab has found three promising candidate genes in individuals with BIID, that are likely to cause BIID when mutated.
This preliminary result of this genetic study should be confirmed by more extensive genetic study called mutation screening, in which all participants of BIID will be screened for three genes to see whether any of these genes are mutated in the participants.
The total number of human genes in each person is estimated to be about 23,000 and we have been able to drastically reduce the number of candidate genes for BIID to three. On the scale of DNA, finding these three candidate genes is much like looking for bank-robbers’ cars in United States, and eventually finding them one in a garage of a run-downed house in a small town in Mississippi, another in the middle
of cornfield of a town of Iowa, and the third one in a junkyard of small town in North-Dakota.
The identification of a disease gene leads immediately to knowledge of the protein coded by the gene and, often for the first time, an understanding of the molecular and physiological basis of the symptoms of the disorder. So far in many genetic disorders, identification of underlying genes has provided extraordinary explanatory power about the nature of the disease symptoms.

Let me put it this way. If your car is broken and thus has some problems you want to fix it. The first step the mechanic takes is to find which component is broken.  After knowing this he can try to repair in various ways.  One way to repair it is to replace the broken part.
Disease gene identification is the same first step to learn where the defect is. Without this step there is no way to deal with the disorder.

If we discover the disease gene:

1. We can confirm the diagnosis, especially when the diagnosis is uncertain.  This means that we can clearly distinguish BIID from other similar disorders.

2. It can offer reassurance by knowing that other family members are unaffected.

3. It can generate immense interest in general medical and genetic community, accelerating awareness and future research.

4. We can understand the role of the gene in normal and abnormal human development.

5. We can try to develop improved therapies.

6. By PGD (Preimplantation Genetic Diagnosis) we can prevent this mutant gene from being inherited to next generation. This PGD is only possible if we know which gene is mutated in a BIID person and where in the gene the mutation is located. Therefore the mutation screening of BIID individuals is a great opportunity to know whether one of these three genes is mutated and if so, in which part of the gene the mutation is located.

We think there is a good chance that these three genes account for large portion of BIID individuals. Genetic research is very slow.
Finding the gene is the very first step. Next, researchers will try to understand the gene function, how it affects BIID, and what other activities it is involved in.

Presently research fellow Hyung-Goo Kim at Dr. Layman’s lab is conducting molecular genetics study of this disorder as a main investigator at Georgia Health Sciences University in United States.

The Molecular Study

There is no cost to you to participate in the molecular genetics study of BIID. We will request blood samples and consent form from you and some family members if possible in order to determine whether one of these three genes is mutated in participants. The personal information of all participants will be kept strictly confidential and will not be released to any company or government or his/her family. The participants can stop participating any time they want and all records will be discarded.

Your participation will make a great difference in this important study.

My history of bladder management

About thirteen years ago my urologist at the time suggested I might benefit from an artificial sphincter implant.  It sounded ideal so I went ahead with the operation. I didn’t realise before hand how major the operation would be (I had a clam cystoplasty as well to enlarge my bladder and make it less spastic) or I wouldn’t have agreed. Anyway, my body rejected the implant and after a further two implants it was removed permanently. This left me with a large bladder, which should have been ideal, but because I’d had a sphincterotomy as part of the procedure I found I’d leak without any warning whatsoever so I had no option other than to wear condom drainage 24/7. This in itself didn’t cause any problems re ITU’s but I sometimes got an infection from self doing ISC. I hated wearing condoms all the time and my skin would occasionally break down so I sometimes fitted myself with an indwelling catheter so that I could feel more ‘normal’ and let a little air get to my bits. This routine worked well for a number of years but I had a problem with a drug I’d inject for sexual function and I ended up having a number of sphincterotomies, the last being in December. These operations have not only left me very free draining but, because my sphincter has been cut so much, I find I tend to leak a little around the balloon of a foley so I only use one occasionally.

Here is a detailed description of the various types of incontinence products I’ve used.

Condom drainage:
This is basically a condom with an open end that connects to the tube of a leg bag or night bag. There are two types, latex and latex free. Latex free are considered better because many people are allergic to latex but personally I prefer the latex variety because I find them thinner and less likely to pop off (this sometimes happens with obvious results). They can be secured in place by means of adhesive, a double sided adhesive tape, or they can be self adhesive. My personal choice is Manfred Sauer extra thin latex condoms secured with a spray adhesive – which is tricky to apply until you’re well practiced. I’ve found that the self adhesive condoms can stick to itself which can prevent urine from flowing and causes the condom to come off. I’m not very keen on the adhesive tape method either because I’ve had these fail a few times, but of these I find Manfred Sauer’s more secure. I also use Manfred Sauer leg bags and thigh bags (when I wear shorts) – and no, I’m not a rep for Manfred Sauer! 🙂

Bioderm:
Similar to a condom but it just adheres to the glans of the penis. I tried this product a few times but unfortunately, because I have a partial meatomy, it didn’t work for me otherwise it would be my preferred method of bladder control.

Intermittent Self Catheterisation:
These are flexible, single use catheters that are fed down the urethra until they enter the bladder. After the bladder has emptied the catheter is removed and discarded. It’s risky using these as they can cause a UTI if equipment and surroundings aren’t sterile. They can also cause strictures or even pierce the urethra or bladder if one isn’t careful.

Indwelling catheters (Foley):
These catheters are held in place by an inflatable balloon that presses against the bladder neck, so preventing leakage. They are meant to stay in place for up to thirty days and should ideally be inserted by a qualified health professional. They should not be experimented with because as well as causing UTI’s they can cause serious injury.

Artificial Sphincter:
The artificial urinary sphincter is an implantable device that has three components:
1. an inflatable cuff
2. a fluid reservoir (balloon)
3. a semiautomatic pump that connects the cuff and balloon

Open surgery is the major form of surgery for the implant. The cuff is secured around the bladder neck and is connected to the pump, and the balloon is situated in the pubic region (it felt like the abdomen to me). The pump is placed in the scrotum or in a pouch below the abdomen. Fluid in the cuff keeps the urethra closed by pressure, allowing continence. To urinate, one temporarily deflates the cuff by pressing the pump. The urethra opens and the bladder empties. The cuff closes automatically. I thought this was a brilliant solution to incontinence and was really sorry when mine had to be removed. You can find out more about artificial sphincter on youtube.

Living with incontinence can be inconvenient, embarrassing and depressing and becomes a major part of one’s daily routine. For me, the main draw back is that I can’t plan ahead because my bladder just empties when it wants to, and I’m constantly feeling my leg bag to see if it needs emptying. It can be very awkward in a theatre or some such place and is particularly inconvenient on a plane, where the toilet is rarely accessible. I found the best solution is to carry a portable urinal (a plastic bottle will do, lol) and discreetly empty my bag into it if I’m desperate. On long journeys or flights I have to restrict my liquid input which isn’t good. As well as bladder incontinence, an SCI usually causes bowel incontinence, but this is usually managed successfully.

Like bicycle tires, there are no perfect wheelchair tires. You have to think what you use your chair for. What is the surface you encounter the most? If you are always on a paved surface, you want to go for smooth tires. Their PSI is around 120. They are fast. They are easy to push. If you wheel on snow, smooth tires won’t do. Just think about mountain bike tires. You want to go for tires that are knobby. As their PSI is about half of the smooth tires, they will feel different. They are not that easy to push but you get good traction for your hard work.

If you have the means, the best thing is to have two sets of wheels with tires. One set of smooth and one set of knobby tires. If your brakes are not easily adjustable, there is an easy solution for them to work on both sets. Let’s say you have 24 inch wheels and you put on them knobby tires that are 1-3/8 inch size. They become the same size as 25 inch wheels with smooth tires and thus you won’t have to adjust your brakes – they will fit for both of your sets.

If you don’t have two sets of wheels, you need to compromise. I use mu knobby tires all the time because no matter what the weather or surface, I won’t get stuck. And I am getting better workout.

I had my tires for a year and though they didn’t show much wear, they were starting to slip. You know, when you go down the hill toward your car really fast and then you stop quickly the same way you stop your skis. You need something sharp. So the other day, I got a new set of tires and tubes for my chair. The same kind of tires as before. They have cute little spikes on them, the tire looks like a hairy caterpillar. Those things will be gone soon but it brings smile to me when I see my kids “patting” the new wheels.

Sometimes people ask me if I am afraid of getting a puncture. Sure, it can happen. I have some white stuff added to the tubes that should seal small punctures. In a year I never had a problem. But it can happen. Well, if it happened to me, I can always get up and push my “disabled” chair. But if you are really concerned, there are two main ways to handle it: you get foam inserts instead of tubes. Then you can have as many punctures and your chair will still go. Or you can buy a little can that contains both a sealant and air that should fix most punctures and carry it always with you.

But wouldn’t world be boring if we never took our chances?

By Alexandra Jefferds

“Individual and Social Experience of Disability”
University of Pittsburgh School of Health and Rehabilitation Science
Dr. Katherine D. Seelman
November 2008

This review examined trends in short children’s picture books written from the late 1960s until the present time, with the intent of deducing from their contents contemporary educational theories and perceptions of disability. Numerous books, addressing physical impairment, blindness, deafness, and cognitive impairment, were evaluated. In addition, online reviews by adult readers (educators, parents, therapists, and others) were examined. It was discovered that books written prior to 1980 tended to be of a dry narration style and contain many facts about the medical and social aspects of the lives of the children depicted. These books “educated” rigorously in the spirit of the c. 1980 culture of disability interventions. Some books written after 1990 followed this model as well, but others told a richer story in which a character’s disability was not the sole focus. Adult reviewers gave praise to both types of books, but the most enthusiastic reviews were reserved for books that heavily emphasized the social aspects of disability. This may represent a recognition that socially-oriented books provide a rich opportunity for child readers to learn tolerance.

Children with Disabilities in Books: Then and Now

Children’s books that address disability frequently do it in one of two ways: Through fiction in which a character has a disability, and through non-fiction that illustrates how a child with a disability goes about his or her daily life. Beyond that, there is great variety among books. Some are quiet, introspective, sensitive, and written to instruct children about someone “special.” Others attempt to open children’s minds using humor. Differences between books published over the years may reflect concurrent changes in educational theories, perceptions of disability, and authors’ expectations of young readers. Ultimately, the effectiveness and appropriateness of each book (as perceived by educators, parents, therapists, and others) is a reflection of current sensibilities about how disability should be explored with children.

Methods

An article recommending picture books to educate children about disabilities (Hopkins, 1980) served as a starting point for compiling a list of older titles. The article named books in four main subject areas: physical impairment, blindness, deafness, and cognitive impairment. Once a tentative selection of pre-1980 books had been created, Amazon.com and other websites were searched for more recently published (post-1990) children’s books in the same four subject areas. These two lists were honed based on which books could be requested through the Carnegie Library of Pittsburgh, because purchasing books for review was not preferable. During the literature search process, the researcher was given one book as a gift, and this title was also considered because it fit the general criteria of the search. Most of the post-1990 books that were found focused on a single character with a disability, so for symmetry in the analysis, the pre-1980 set was limited to those that followed this construct. Chapter books, long picture books, and books that were of a purely didactic rather than narrative nature were eliminated. For example, What If You Couldn’t? A Book About Special Needs (Kamien, 1979) was not used, but Janet at School (White, 1978) was included. Both books were nonfiction, but the latter focused on a single child, while the former was a chapter book that addressed multiple disabilities. The two sets of books were finalized according to a number of criteria. All four subject areas described in the Hopkins article were included. In some cases, preference was given to a pair of books (one of each set) when the researcher discovered a similar plot element, narrative style, or message in each. This was done so that a direct comparison could be made between the two authors’ treatments of this element. The pre-1980 and post-1990 lists were finalized to contain varying educational philosophies and narrative styles, and address a variety of different disability categories. The lists were not exhaustive due to the large availability of materials. Rather, they reflected the researcher’s interests and sensibilities as a rehabilitation engineering student. Ultimately, each book was selected because the researcher believed it could contribute to the analysis in a meaningful way. Each book was read and evaluated by the researcher, as objectively as possible using her disability studies and rehabilitation experience. An article on evaluating the quality of children’s books about mental disability (Heim, 1994) was referenced. This article recommended five criteria to judge the merit of a book: “accuracy of information” (p. 139), “lack of stereotypes” (p. 139), “literary quality” (p. 139), “confronting the disability” (p. 140), and “not ‘using’ disabled characters” (p. 140). Because these guidelines mainly focused on the issue of respect, they were considered applicable to all books in the analysis, irrespective of the disability discussed. To explore the public’s perception of the book selection, Amazon.com reviews were examined, when available. Such reviews were found by searching for a book’s title (sometimes in conjunction with the author), clicking on the appropriate result, and scrolling to the bottom of the page. When a book did not have reviews on this website, the broader internet was searched for a review.

Results

Physical impairment

Books for children about physical impairment included Tracy (Mack, 1976), Janet at School (White, 1978), Rolling Along: The Story of Taylor and His Wheelchair (Heelan, 2000), and ZOOM! (Munsch, 2003). Tracy and Janet at School are similar in style and content. Both are factual books about the daily lives of girls with congenital impairments, and both portray the girls engaging in school activities with and without their wheelchairs. The narratives are relatively bland and there is an emphasis on facts. In contrast, the recent books with physically impaired protagonists have richer, more fully rounded storylines. Rolling Along depicts Taylor, an African-American boy with cerebral palsy, interacting with his peers. Taylor contemplates accessibility and confronts his friend’s belief that his use of a wheelchair is a tragedy, when in fact it allows him to move around faster and participate more. Amazon.com reviews were unanimously five-star, with readers praising this book’s attention to wheelchair accessibility and social interactions (Curatti, 2000; Library Gaga, 2005). ZOOM! is a fictional story in which a girl goes to a sparkling “wheelchair store” (p. 6) and rejects wheelchair after wheelchair because each is “too slow” (pp. 8, 10, 12, 30). Eventually, her need for speed saves the day when she takes her brother to the hospital. The worst repercussion of her disability is a speeding ticket. The book does not directly confront the realities of disability, but it is a humorous story told from a completely non-medical perspective. It portrays a child as a hero (not due to her disability, but her actions) who contributes to her family’s wellbeing. One Amazon.com reader loved that it doesn’t try to convey a message (Paper Pen, 2006), and another praised the fact that the author “recognizes the sensational independence that the wheelchair brings” (Beck, 2004d).

Blindness

No books about blindness published after 1990 that fit the other review criteria were found. Books that were found included Sally Can’t See (Petersen, 1974), The Seeing Stick (Yolen, 1977), and Knots on a Counting Rope (Martin & Archambault, 1987). This last book did not technically meet the review criteria (it was published neither pre-1980 nor post-1990), but the apparent scarcity of modern picture books about blindness, and the book’s status as a Reading Rainbow television show featured title, compelled the researcher to include it. Sally Can’t See (Petersen, 1974) depicts Sally as a girl who is capable of learning in ways that do not require sight. However, that message is perhaps the only positive part of the book. The book edges on the melodramatic, constantly reminding readers that she is doing all of these positive things despite her impairment. There is always a sighted friend or caring adult close at hand to make her feel confident, help her stay safe, or assist with an art project. Through careful tutelage, she has learned slowly what other children learn quickly. The reader might be led to believe that Sally’s entire life is an educational exercise. The Seeing Stick (Yolen, 1977) takes the reader to ancient China, where the emperor is concerned for his blind daughter. He searches far and wide for someone who can help her. Eventually, an old blind man teaches her to “see” with her fingers. The princess is portrayed as a delicate, virtuous young creature. Similarly, the old man is full of wisdom and compassion. Though these are stereotypical portrayals of blindness, the power of the book emerges through the fact that one blind person helps another. Knots on a Counting Rope (Martin & Archambault, 1987) is the story of a blind Navajo boy whose grandfather tells him the story of his birth and upbringing. The boy delights in hearing once again how he is able to thrive as a member of his Native American community thanks to the power of the blue horses that lend him his name. He is shown participating in tribal events and learning to use his other senses to navigate his home region on horseback. Most Amazon.com reviewers found the story to be a beautiful and respectful story about a boy, but more than one person described the book as a gross misrepresentation of Navajo culture (Ernst, 2001; Fowler, 2006).

Deafness

Books about deafness included Lisa and Her Soundless World (Levine, 1974), My Sister’s Silent World (Arthur, 1979), Dad and Me in the Morning (Lakin, 1994), and Elana’s Ears (Lowell, 2000). Numerous other books were available, though many were similar to these in tone and treatment of the subject matter. These four were chosen as a representative sample. My Sister’s Silent World bears a resemblance to Janet at School, Tracy, and Sally Can’t See in that it is a factual narrative about the daily activities of a child with a disability. As the title suggests, it is told from the point of view of a sister. The book addresses the fact that deafness cannot be seen, and describes the various ways that the narrator’s sister communicates. It is an optimistic book that addresses bullying but emphasizes how ordinary the narrator’s sister really is. In contrast, Lisa and Her Soundless World depicts a dismal picture of deafness. It begins by presenting a presumed unimpaired reader with several pages of explanation of how the reader is lucky to have five senses that work. Deaf Lisa, however, is not so lucky, because she has always been the target of relentless teasing and isolation. However, when she is diagnosed as deaf at the preposterously old age of seven (by a doctor who can tell instantly what her parents could never figure out), everything changes. She gets hearing aids, jumps for joy, listens gleefully to the ordinary sounds around her, and begins learning to talk with the assistance of professionals. The book ignores the realities of child language development and is rife with melodrama. The book is out of print, but it still has one review on Amazon.com. The reader appreciated the book’s explanation of how assistive technology can be used to compensate for lost senses (Elainaxyz, 2001). Elana’s Ears also describes the process of a girl being diagnosed as deaf, but this time the story is told from the point of view of her family’s dog. Elana is diagnosed at age two, after her parents suspect she cannot hear. The fact that Elana’s parents suspect something is more realistic than the doctor-centric premise in Lisa and Her Soundless World. Elana’s Ears depicts the friendship between a girl and her dog, and portrays both characters as having distinct, quirky personalities. Amazon.com reviews were generally positive but not passionate. One person appreciated that the book addresses sibling rivalry in addition to deafness (A Customer, 2000). Dad and Me in the Morning begins not with a baby’s diagnosis, but with an older boy jumping out of bed to go watch the sunrise with his father. The boy puts on his hearing aids, uses a number of ways to communicate with his father, and employs all of his senses to enjoy the morning. It is a beautifully illustrated and narrated book about an ordinary boy who happens to be deaf. It transcends the need to “confront” the disability because the disability is not what drives the story. Amazon.com reviews (some by members of the Deaf community) were very positive, and particularly appreciative of the father character’s willingness to learn and use sign language with his son (Walker, 2000; Beck, 2004a).

Cognitive impairment

There were numerous books about cognitive impairment. As with deafness, a representative sample had to be selected. These were: One Little Girl (Fassler, 1969), Don’t Forget Tom (Larsen, 1974), My Brother Steven is Retarded (Sobol, 1977), Be Good to Eddie Lee (Fleming, 1993), and Ian’s Walk: A Story About Autism (Lears, 1998). One Little Girl is the story of Laurie, whose many capabilities are overshadowed by poor performance in school. The inside front of the book jacket describes Laurie as “somewhat retarded,” but from a modern perspective, the book reads more as a story about learning disabilities. In either case, its message is clear: negative attitudes and labels can hurt a person’s self-esteem. This is another book in which a doctor provides a diagnosis. In fact, it is his advice that catalyzes a change in the way that Laurie’s family views her abilities. Don’t Forget Tom follows the familiar format of describing a child with a disability’s day. While the book is mainly a description of one boy with Down Syndrome, the text jumps twice to a discussion of children with cognitive impairments in general. This strategy might give readers the impression that all people with this type of impairment are alike, and that it is appropriate to generalize. Furthermore, the book was translated from Danish in an oddly formal, stilted voice (using the word “for” to mean “because”), which might not appeal to modern readers. My Brother Steven is Retarded would require some preface if read to children today, if only for the outdated terminology used throughout the book. People-first language is not used, and the term “retarded” is use to describe cognitive impairment. The content of the book is not obsolete, however. It is a remarkably honest portrait of a girl describing her brother’s disability and its impact on her own life. She admits that “I’d rather it were Steven than me” (p. 11), describes the embarrassment of being seen with him in public, but also says she enjoys making him happy. In a New York Times article (Brooks, 1986), the book was recommended for siblings of people with disabilities. Be Good to Eddie Lee is the fictional story of a boy with Down Syndrome whose presence initially impedes a girl and her friend’s efforts to enjoy a romp through the woods. Eventually, however, the girl realizes that Eddie has a lot to offer and comes to value his company as well. Eddie proves himself to be a worthy playmate by showing that he has a host of unusual skills (e.g., catching salamanders) and demonstrating exceptional kindness. This combination of traits seems very forced. The book would have been more powerful if Eddie had shown his capabilities through self-expression or creativity. As it is, the girl’s character grows immensely with her appreciation of Eddie, while Eddie merely reveals himself to be more capable, intelligent, and saintly than his unflattering description at the beginning of the book suggests. Amazon.com reviewers were divided; eleven praised the book for being “touching” (Teacher La La, 2007), “heart-warming” (ADH, 2006) and “sensitive” (Allen, 2006) but several panned it on the basis that it is “condescending” (Beck, 2004c; Wheat, 2005), full of insulting language (Beck, 2004c), and perpetuating stereotypes (A Customer, 2001). A premise similar to the one in Be Good to Eddie Lee appears in Ian’s Walk, in which a sister is initially embarrassed about the behavior of her brother, who has autism. However, in the course of an eventful afternoon, she becomes more accepting of him. This book is less sticky-sweet than Be Good to Eddie Lee because the sister’s transformation occurs without Ian “proving himself” or exhibiting a saintly demeanor. Amazon.com reviews were mostly positive, though two readers cautioned that Ian’s behaviors should not be taken as universal (Beck, 2004b; A Customer, 1999).

Discussion

An examination of the literature indicates that authors’ strategies for teaching children about disabilities have changed over the last several decades. Books written prior to 1980 reveal a drive by authors to teach with factual stories and confront disability head on, in as much detail as the format of a children’s book permits. Information about a child character’s disability as well as his or her interests and family are frequently discussed. Very rarely are these books of high literary quality, nor are they particularly offensive. The dry narration style may reflect educational theory of the time. Circa 1980, there was a heavy focus on “intervention programs” for disability (Ferguson, 2001, p. 374). It was believed that disability could be compensated for by intensely educating all parties involved in the child’s upbringing. Books that speak to non-disabled children specifically (Lisa and Her Soundless World, Sally Can’t See) are part of an effort to educate the larger community. However, this feature is concerning because it alienates readers with disabilities. Furthermore, the danger of resorting to melodrama—a slippery slope toward pity—is high. The author’s choice of narrator can also influence how respectful a book is toward its characters and readers. Heim (1994) was concerned that books with sibling narrators use the child with the disability to the exclusive benefit of the sibling’s social growth, and this may be true in some cases. In the pre-1980 set, books with sibling narrators focus on describing the child with a disability’s likes and dislikes, and neither the subject nor the narrator evolves very much. Sibling or friend narrators in the post-1990 set (Be Good to Eddie Lee, Ian’s Walk, Elana’s Ears) often make some kind of progress toward accepting the child with the disability. The analysis done for this review suggests that sibling narrators are most appropriate if the book is clearly targeted at siblings, as in My Brother Steven is Retarded. However, if the author’s intention was to educate readers about a disability, then narration from the perspective of the character with the disability is perhaps a more respectful tactic. Books which place readers in the protagonist’s shoes, wheelchair, or hearing aids run less risk of alienating readers with disabilities—the group who could potentially identify with the characters the most. The books about blindness seem to be slightly ahead of their time; more than one book written prior to 1990 (The Seeing Stick, Knots on a Counting Rope) had a substantial plot and blind protagonists. This is an unexpected finding because traditionally, blindness has been considered one of the more abysmal, pitiable afflictions (Albrecht, 2005). Perhaps fewer books about blindness have been written recently because authors have not perceived the need for new ones. It is interesting to note that no books told from the perspective of a child with a cognitive impairment were found. This may represent a literary bridge that has not yet been crossed. The positive tone of most online reviews indicates that, on the whole, modern adult reviewers (who include parents, teachers, and therapists) are forgiving of minor inaccuracies and outdated terminology as long as the book serves some perceived educational purpose. Likewise, the pre-1980 books, which have few online reviews, still appear on recommended reading lists about disability. It may be that because there are relatively few books about some disabilities, readers welcome whatever exists. Highly negative reviews were only given when reviewers perceived gross inaccuracies or severe inappropriate portrayal of characters. An analysis of modern readers’ perceptions of the pre-1980 books was not possible because few online reviews for these books were found. However, the analysis of reviews of the post-1990 books suggests that while readers welcomed stories that addressed the medical aspects of disability, the most enthusiastic reviews were reserved for books that focused on the social aspects of disability. For example, applause from within the Deaf community for Dad and Me in the Morning is high praise indeed, given the pride that Deaf individuals have for their culture (Albrecht, 2005b). Rolling Along was commended for its attention to wheelchair accessibility, and ZOOM! for its zany, entirely non-medical premise. Adult readers may find these books appealing because they believe social topics, rather than medical details, provide more effective, engaging opportunities for children to learn tolerance. This new writing strategy does not automatically make for better books, of course, because any story is potentially vulnerable to author prejudices and misconceptions. It remains the responsibility of children’s authors to craft stories of literary merit, to depict disability accurately and respectfully, and to cultivate tolerance without perpetuating stereotypes.

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