The Three "R's"

Ramblings, Reflections, Reviews … From the "Pen" of William Land

A Discussion: People Living with Disabilities …

A Discussion: People Living with Disabilities
From the JudyBoltonFans Discussion Forum

2006

Introduction

The discussion from the JudyBoltonFans discussion forum around attitudes of people living with mental and physical disabilities prompted me to write a detailed reply chronicling my own experiences as a person living with disabilities. This article summarizes the relevant responses from the participants.

To protect identities, I have removed personal names, substituting the generic word, “Fan” and a number, for each person. The postings have been slightly edited for grammar, spelling, and other errors.

The Judy Bolton mysteries by Margaret Sutton (1903-2001) are a 40 volume series chronicling the adventures of girl sleuth, Judy Bolton. This series is similar to the Nancy Drew mysteries, but with significant differences. Margaret Sutton was a real person and not a pen name for multiple identities as was “Carolyn Keene.” Mrs. Sutton wrote the first 38 books (1932-1967) which were published by Grosset and Dunlap. Abruptly, the publisher cancelled the series in 1967.

Judy Bolton  #6: THE YELLOW PHANTOM, ©1933. Artist: Pelagie Doane, ©1933.

Judy Bolton #6: THE YELLOW PHANTOM, ©1933.
Artist: Pelagie Doane, ©1933.

Judy Bolton was a schoolgirl in the first book which follows the events from the summer of her 15th year. Early subsequent books chronicle her family’s move to a new community and into a supposedly haunted house, and her experiences at school, and on vacation. Judy ages as the series progresses, graduates from high school, works for a time, chooses between two suitors, becomes engaged, and marries. Judy, as the young wife of a FBI agent, continues to sleuth. In the latest novel, Judy, who is either 21 or 22, announces that she expecting twins.

Mrs. Sutton had based each book “on an event that actually happened.” She had fictionalized several Pennsylvania communities as being those from the Judy Bolton series. Since the early 1990s, many Judy Bolton fans reunite annually in these real locations to meet and explore “Judy Bolton country.”

The Judy Bolton series is back in print since 2011. These new paperback editions from Applewood Books are facsimile editions of the first 38 original Grosset and Dunlap books.

In 1986, prolific children’s author, Linda Joy Singleton co-wrote a Judy Bolton novel with Mrs. Sutton. The Talking Snowman chronicles the events between the third and fourth books in the series. The book is number 3.5. In 1997, Ms. Singleton self-published and sold this book. Now on its second printing, copies are sold directly by Ms. Singleton.

In 2012, The Strange Likeness, (#39), was written by two long-time fans with the permission of Mrs. Sutton’s daughter who holds copyright. The story is based on some ideas and plans Mrs. Sutton had for continuing the series.

Pauline Faulkner, the daughter of an esteemed psychiatrist, is a recurring character in the Judy Bolton series. A discussion about Pauline’s attitude toward mental illness prompted this thread on the JudyBoltonFans discussion forum. The title of the book under discussion is The Yellow Phantom.

Pre-Discussion Postings Prior to My Original Response

Fan-#1 wrote:
I think that Pauline’s attitude towards the mentally ill or “feeble-minded” was prevalent at the time. Mental illness was poorly understood and so were many crippling illnesses. My mother had a horror of people who were affected in either fashion. Yet, she was very compassionate towards others. (Ironically, she now has severe dementia and has degenerated so severely that her mentality is that of a 3-year-old and she can no longer walk.)

The misunderstandings continued for several decades after this book was written. I don’t know if any of you have ever read Karen and With Love From Karen by Marie Killilea. Karen was her daughter who had cerebral palsy. According to Mrs. Killilea, they searched for years for a specialist who could help. One specialist even told her that in China, they knew what to do with such children. They took them to a mountain top and left them there to die. This was in the 1940’s. So, Pauline’s feeling as she did was not unusual. Margaret [Sutton, author of the Judy Bolton mysteries] was ahead of her time, once again, in her understanding.

Fan-#1 wrote:
We have come a long way though. In the 1980’s, I had a student in my 9th grade French class who was deaf. Her parents never allowed her to sign; they insisted that she be able to lip read so that she could function in a hearing world. I used to have her mother bring her to my home once a week and I taught her French phonetics so that her pronunciation would improve. She was one of my top students. Later, I heard that she graduated summa cum laude from college.

Then in the 1990’s I had a student who had CP. She was unable to write legibly. She used a word processor to take notes. Both those girls were a pleasure to have in class. They also had a lot of friends.

Fan-#8 wrote:
I first read the Karen books in college over thirty years ago. They really give an interesting comparison to public views then and now. There was also a book by Dale Evans about their Down’s syndrome child and how such children were to be pitied.

I student taught at the state school in the early 70’s and it was full of children who were only mildly disabled, but their parents did not have the support to keep them at home.

On 20/20 next week is the story of a Down’s couple who met and married. Also there was the actor. Many mental illnesses were blamed on the maternal bond, imagine having to deal with a child with mental illness while being blamed for the condition. Now there is a lot more support, but in some cases. old attitudes persist.
My Original Post

Fan-#1, what you have written about the treatment of people with disabilities is so true. Pauline’s attitude reflects what was prevalent in society at that time. In my experiences and observations, North American society has become more accepting and knowledgeable of the issues and needs of people with disabilities in the late part of the 20th century.

I was born with cerebral palsy. It is mild and for many years I did not use assistive devices. However, since about age 37, I need to regularly use a cane and require longer rest periods and medication to cope with physical pain.

I have always tried to live my life as independently as possible. My strong will and stubbornness are two factors to my success. Also, I have accepted there are some things that I’ll can’t do or easily do and this is the way it is.

As a young child, I remember that I would often hear my some of my parents’ friends, neighbours, or relatives say to my mother, “We’ll he’s normal.” I didn’t understand what they meant because I felt “normal” to me. It took me many years to understand that they meant “non-disabled.” This isn’t true, but I came to realize what they meant is that my limitations are few like most children.

As a child, I felt that I never fit in with the other children who didn’t have a visual physical disability (that’s one of the reasons why I read and valued series books so much; my book friends were my real friends). At one point when I was a pre-teen, I had a hard time accepting my disability and was hoping for the miracle cure that I would read about in some series. I was hoping that each surgery would make me “walk normally.” Finally, after the third and final one at age 15, did I accept that a miracle wasn’t forthcoming.

My mother had a friend who was a nurse and she recommended that Mom and I read both Karen books that Fan-#1 has mentioned. After reading these books, my attitude changed. Karen had greater physical challenges than I had and she had a better outlook on life. Karen was inspirational to me. I also didn’t want to be left on a Chinese mountaintop and I feared for a short time that my parents might seriously consider this! <grin>

With proper supports, people with physical disabilities can live full, productive and independent lives. Even those who require attendants for the activities of daily living can be independent as long as he/she is able to instruct the attendant about her/her needs.

In my opinion, I think people with mental disabilities generally have a harder time in life than people with physical ones because Jane and John Q. Public aren’t educated effectively in the best ways to cope with and help someone who is having a mental health challenge; e.g., schizophrenia, bipolar disorder, or severe depression. However, with a lot of hard work and the right therapies, including medication, people with mental health challenges can lead productive lives.

Judy Bolton  #6: THE YELLOW PHANTOM, ©1933. Artist: Unknown, ©1950.

Judy Bolton #6: THE YELLOW PHANTOM, ©1933.
Artist: Unknown, ©1950.

Post Discussion Postings

I wrote:
I read with interest to the varied responses following my last week’s post about the treatment of people with disabilities. I would like to comment on some of the postings members wrote.

Fan-#1 wrote:
It is very true, Bill, that North American society has become more accepting. A lot of that is due to advances in medical science and public education. When public schools went to “mainstreaming,” meaning including children with physical and learning disabilities in regular classes, it helped make so-called “normal” children and their parents aware that all children are individuals, no matter what their limitations and that intelligence is not exclusively the province of “normal” children. In many places, this inclusion didn’t take place until the mid 1980’s.

My response:
Very true about what you wrote about inclusion, Fan-#1. (By the way, I found your postings on this topic so accurate and insightful). In 1999-2000, I worked briefly (six months) as an Information and Referral Co-ordinator for an organization in Toronto providing programs and services for people with disabilities. One of the principles of the independent living program is to teach people the skills needed to live as independently as possible. Another thing I really liked is that everyone was treated equally; e.g., first come first serve unless a situation was critical. Some people with disabilities have an attitude that they should be given preferential treatment due to disability and such wasn’t the case in this organization.

In an aside: I didn’t fit well in that job because I was to refer consumers to organizations that would provide services. That’s fine in an ideal world, but many programs and services have long waiting lists and I was only providing a band-aid where major surgery was needed. I felt helpless and couldn’t separate that I was only to “refer” people and not “help” them. I was so glad to return to the library world, albeit in a non-traditional setting.

Fan-#1 wrote:
You are also right about mental illness. It is still poorly understood, not only by the public, but also by the medical profession. For example, with the influx of new drugs, children with behavior problems are immediately given medication without regard to what the problem may be. Everything is labeled ADD (Attention Deficit Disorder). Even my grandchildren’s pediatrician’s office is plastered with posters and literature about ADD. I’m not saying it doesn’t exist, because it does, but many children who “act out” do so out of boredom or from the pain of emotional trauma. Too little attention is paid to the cause and too much to a quick fix via medication. The same is true among adults who have some form of mental illness. My sister retired from her psychiatric practice a few years ago, one of the reasons being that she refused to become purely a means of dispensing “happy” pills. Yes, there are some mental illnesses that you mentioned that require medication like schizophrenia and bi-polar disorder, but the proliferation of ads about pills for depression, etc., has caused psychiatric patients to demand medication and psychiatrists to dispense it indiscriminately.

My response:
Yes, yes, yes! There are no quick fixes when dealing with mental problems. Therapy is long, hard work, but can pay off if the patient is willing to change and work hard at necessary changes.

Fan-#1 wrote:
I will now step off my soap box. I just want to add that it is surprising that Pauline has the attitude that she does towards people with mental or physical disabilities. With her father a recognized specialist in the field, you would have thought that he should have taken the time to disabuse her of her prejudices.

I wonder if Pauline wasn’t as open about her prejudices around her father. Perhaps she kept them to herself and only shared with her friends of similar age or belief? Dr. Faulkner, as a recognized specialist, would have been able to effectively educate this daughter.

Fan-#2 wrote:
Bill, I have always found you to be an inspiration because of your attitude. There are so many people who complain about the most minor things and you always see the bright side and cope with your challenges so well.

My response:
Thanks, Fan-#2, for the lovely compliment. I don’t think you, or anyone else, would think I was coping very well on one of my very bad days, though. <smile> Those are the days I wisely keep to myself.

Fan-#2 wrote:
Lately, I have been thinking about what a great invention the computer has been for people with disabilities or very lonely people. Some of the groups I belong to have quite a few people with different challenges. If someone is very housebound without a lot of human contact, it must be wonderful to be able to communicate with so many people who have interests similar to your own.

My response:
Yes, this is true, but I do know of some people with disabilities that have trouble using a computer because of mobility challenges, but they can effectively make use of assistive devices.

Fan-#3 wrote:
Fan-#2, this is so true. Fan-#3-Partner and I both belong to a number of support groups for people with fibromyalgia (in fact, it’s how we met originally). Both of us suffer from it and I also have SLE (lupus) and diabetes.

I just want to very quickly add something that happened in our family when the kids were much younger so I’m grabbing Fan-#1’s soapbox for a moment. <smile> (I’m not short…I’m challenged.)

Both of my older kids had been diagnosed as being ADD by military doctors and put on Ritalin. One night I attended a lecture by Dr. Lendon Smith and he seemed to be describing my kids perfectly. We made an appointment for the next day to meet at his office in Portland, Oregon and he allergy tested them. The one thing we came away with was knowing that neither of them suffered from a Ritalin deficiency but both had severe allergies that were causing a lot of the problems. We dealt with the allergies and the kids were fine.

My response:
Fan-#3, you’re right that support groups can be a wonderful support and opportunities to form friendships or more. And, yes, many people have multiple disabilities. Best wishes to you as your family cope with your challenges.

Fan-#4 wrote:
Just wanted to let you folks know that I’m still kicking around <grin>. I don’t think I could live without my computer for too long; my generation certainly has been spoiled by a lack of work ethic and true accomplishment. I myself have a program that types to the sound of my voice! People from my grandmother’s era, and even some from my mother’s can’t get over how far we’ve come!

My response:
Fan-#4 is an excellent example of someone using assistive devices effectively. Yes, I agree that some of the “oldsters” can’t believe how technology has changed, but many of them embrace it effectively. Three of my father’s sisters bought computers in their 60s because they wanted to learn to use the Internet to view the family website my cousin developed and to receive pictures electronically, especially of their grandchildren. I say, “good for them!” <smile>

Fan-#5 wrote:
Good for you Bill! You have a positive attitude.

My husband has a disability—he gets dizzy and has not been able to drive for years. yes, it’s inconvenient. But when I look at all the people who have cancer, and other kinds of problems, I just think we can deal with this. And there are people out there with many more limitations doing just fine. A lot has to do with attitude. Fortunately, our world is becoming more accepting of differences, and not just in skin color or religion.

My response:
Thanks, Fan-#5. I learned to be positive because I wasn’t as a teenager. I had a very negative and pessimistic outlook about many things. When I realized that I didn’t like myself and knew that others didn’t either, I decided to change. I became more accepting of life’s challenges and hardships and decided more and more to march to the beat of my own drum, as the saying goes. As I changed and grew to like myself, I discovered that others liked me, too. For many years now, I have been truly blessed with the quality and quantity of people in my life.

I also like, Fan-#5, that you and your husband learn to look at the bigger picture: yes, it could be worse. A positive attitude and a sense of humour are the best ways, in my opinion, to effectively cope when the roads are rocky.

Fan-#6 wrote:
Fan-#1, I am impressed by your recollections and obviously exceptional teaching abilities. I never had the professionalism or discipline it takes to do any of the things you’ve mentioned recently.

I also have a little of the bravery Bill possesses. Maybe someday our culture will learn to celebrate the individuality and talents of all people, and not be concerned with “differences.” I’ve been so fortunate in my life, and even though I had a brief stint in a psych ward (I recommend this for everyone!), I have never had to cope with a situation such as yours, Bill. Your hopes as a youngster to be “cured” touched my heart…and I applaud your ability to change your perspective (something many people never do).

Fan-#2, I liked your comment about people being isolated, since I mentioned my psych ward experience, I’ll tell you that we patients all realized that none of us had truly talked to anyone for years. I’ll join you on the soap box to say that the way we live, rushing about, distracted by dubious priorities, removes us from real contact with each other. One of my favorite philosophers says that all life is relationship and isolation is death.

Fan-#7 wrote:
Thanks, Fan-#6. I don’t often mention that I also had a psych ward experience. I was very uneducated in some things even though I was in college at the time. Medication and good friends and knowledge of some of the things that caused the problem helped. I found that depression can run in families and that exercise does help. Since I have been going to Curves three times a week, I feel much better. As for other hidden disabilities, I have no binocular vision and have a problem with spatial relationships and am a member of Mensa.>>

Fan-#6 wrote:
Fan-#7, I’m not surprised at all to learn you are a Mensa member. From the caliber of the messages posted on this site, I’m certain I am reading commentary from some extremely intelligent and wise individuals. That includes Bill who sounds like a great guy; I am very glad he started posting.

As far as psych ward experiences go, I wasn’t being facetious about my own stay there…I DO recommend it highly. Being confined in a mental ward may not be “fun,” but I learned there one of the most important lessons of my life: that one’s thinking may not be correct, may even be destructive, and that we can choose the way we look at things. It does seem that talented/artistic and intelligent persons are often subject to mental problems.

My response:
Fan-#6 is right that we can choose our viewpoints and ways of looking at things. Mental illness strikes all walks of life and physical disability can also strike without little warning. However, most people are strong and can cope with their “lot in life.” The members of this group have certainly proven that with what they have shared.

My response:
Good for you, Fan-#7, and Fan-#6 and anyone else coping with similar disabilities. Life is difficult at times, but a well-balanced diet and regular exercise does go a long way in being great coping mechanisms. I know this in theory, but I personally have a hard time in practice. I love food far too much and exercise far too little to be balanced. <smile>

Fan-#8 wrote:
Bill, I commend you for your strength. You are very right about people with mental disabilities. I know this the hard way, for my son had bipolar disorder which onset at age 17. In spite of being valedictorian and a great athlete, he ultimately took his life at age 24 because of the great emotional pain he could not bear suffering. Although he looked perfectly “normal,” he had a disability which he was not able to overcome.

My youngest daughter was born with a cleft lip and palate although with a wonderful surgeon it was a correctable condition. Once she was questioning why it had happened and my husband explained to her that we all have some sort of disability, hers just happened to be right there on her face.

Some people are not able to be happy, did you ever know anybody like that? It seems no matter what they have, they are always miserable. To me, that is the worst.

I wonder if Karen is still alive. I know her mom died many years ago of lung cancer.

My response:
Thank you Fan-#8 for sharing about your son’s disability and that he completed suicide; how sad for you, Fan-#8. Perhaps he found the peace in afterlife (my belief) that eluded him on earth. Fortunately, he will live on in the hearts and memories of those who knew and loved him.

Fan-#1 wrote:
Fan-#8, I’m so sorry to hear about your son. I can’t even fathom how difficult that must have been for you and, no doubt, still is. Unfortunately, everyone I have known with bipolar disorder has eventually committed suicide, including my first husband and my cousin’s stepdaughter. They were both on medication and had stopped as soon as they began feeling better. Both were also extremely bright people.

I love your husband’s explanation to your daughter. It’s very Killilea-like.

In answer to your question, yes, Karen is still alive. There is a Yahoo group called Killilea Fans. I joined a long time ago and read all the archives and files relating to the family. I don’t generally participate because the discussions mostly are personal issues now among members. A Killilea family member had requested that the group refrain from trying to make any further contact with Karen and other members of the family as they wished their lives to remain very private. The group has complied with the request.

If you do decide to join to read the archives and the files, be prepared to be very sad. They had some terrible tragedies long after the publication of the books.

Fan-#8 wrote:
Fan #1, thank you for your kind words. It is indeed a cruel disease, but I was blessed for 24 years to have him in my life.

Thanks for the info about the Karen site. I found an Amazon site with some follow-up about the family. You are right, there were tragedies.

My response:
Also, Fan-#9 had thanked me for sharing and it is my turn to convey long overdue thanks to her for leading the book discussions. Also, Fan-#10, kudos for summarizing them on a website for members to enjoy.

As I draw to a close, I realized how much time has passed since I started to write this and, clearly, once again, I’ve probably said too much! <smile> For those who have read to the end, thanks! <another smile>
Conclusion

As someone who strongly believes in support for people living with disabilities, I wanted to share this discussion. It is very important to talk opening and share information about these issues and challenges.

As evidenced by the replies from participants, people have very different life experiences in many ways, yet they also have very similar experiences and reactions to them. It is helpful for anyone, disabled or not, to know they are not alone.

I am fascinated that a book that a children’s book from 1933 could generate such personal and interesting replies from adult fans who participate in this Judy Bolton discussion group.

Judy Bolton  #6: THE YELLOW PHANTOM, 2011, ©1933. Artist: Pelagie Doane, ©1933.

Judy Bolton #6: THE YELLOW PHANTOM, 2011, ©1933.
Artist: Pelagie Doane, ©1933.

Bibliography

Killilea, Marie. Karen. New York: Prentice-Hall, ©1952. 314 pp.
Killilea, Marie. With Love From Karen. New York: Prentice-Hall, ©1963. 371 pp.
Sutton, Margaret. The Yellow Phantom. New York: Grosset and Dunlap, ©1933. 210 pp. (A Judy Bolton Mystery; 6)
Sutton, Margaret. The Yellow Phantom. Bedford MA: Applewood, ©2011, 1933. 210 pp. (A Judy Bolton Mystery; 6)

 

©2015 William Land

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