Fighting For Yes! by Maryann Cocca-Lefler

When Judy Heumann was a little girl, life in a wheelchair meant not being able to do many things. When she was five-years-old her mother attempted to sign her up for kindergarten but the principal refused, saying that Judy was a fire hazard. They then decided to try enrolling her at the Jewish School. The principal told Judy's parents if she learned Hebrew she could attend in September. Despite taking Hebrew classes in the summer, Judy was refused admittance in the fall. 

Judy spent years studying at home with a teacher who would come to their home. However, Judy loved to learn and the teacher was only able to come a few hours each week. In the afternoons, Judy played with her friends in their neighbourhood. They would tell her all about their day at school, going to the gym, the library and music classes. Judy's mother signed her up for activities after school but getting into the buildings for them was difficult. It meant taking her wheelchair up stairs and over bumpy curbs.

When Judy was nine-years-old she was accepted to the Health Conservation 21 class at Public School 219. However, she soon discovered that her class, held in the basement,  was made up of only eight students, all of whom were disabled. Regular students attended class in classrooms upstairs.

As Judy and her friends were growing up, they were able to go to many places she was not, such as restaurants, public transit or the library. Most buildings had entrances with stairs, and there were no ramps. One place Judy loved was Camp Oakhurst, a summer camp for children with disabilities. There she had the freedom to do many things and she felt included.

When she was fourteen-years-old, Judy attended high school, the first student from her Health Conservation 21 class to do so. Despite having few friends and feeling left out, Judy worked hard and graduated. The principal didn't want Judy to be on stage with the other students, but her father insisted. She was placed at the back, where her wheelchair was hidden. Judy had won a leadership award, but it was given to her at the back of the stage where she couldn't be seen.

Judy attended college, became a teacher and became active in politics after she met other people with disabilities. However, when it came time to obtain her teacher certification, Judy was told she was a danger to students!  Judy had had enough and she decided to sue the New York City Board of Education. She had taken all the required courses and was qualified. This was during the 1960's when the civil rights movement was taking place and Judy's struggle was also seen as an important one. Her suit was to be the beginning of serious challenges that would obtain the right of people with disabilities to participate fully in society and in the workplace.

Discussion

Fighting For Yes chronicles the fight for equality for people with disabilities from the perspective of Judy Heumann. Born in 1947, Judith Ellen Heumann had polio when she was eighteen months old, spending three months in an iron lung. For the next three years she was repeatedly hospitalized. Her parents refused to consider placing her in an institution, as the doctors suggested.

Judith had a strong desire to learn and had to fight to be included in the education system in the United States. As mentioned in Fighting for Yes, when she was not allowed to enroll in the public school just down the street from her home, she was given a teacher from the Board of Education for a total of two and a half hours a week! The only way Judith was able to attend high school was due to the efforts of her parents and other parents of children with disabilities, demanding the Board of Education make some of the high schools in New York City wheelchair accessible, which they did. 

Judith was able to attend university, obtaining her Bachelor's degree in 1969. When she applied to obtain her teaching license, Judith passed the oral and written exams but failed the physical exam because she had had polio. The Board of Education was afraid she would not be able to lead her students to safety in the case of a fire. So her license was denied. When her situation became public through an article and editorial in the New York Times, she received both public and legal support.  After this, Judith decided to sue the New York City Board of Education. She won the case which was heard by the first African- American woman judge, who as Judith described in her Ted Talk, "knew discrimination when she saw it." Judith was hired as a teacher and taught elementary school for three years. In 1975, she received her Masters in Public Health from the University of California at Berkley. 

In 1977,Joseph Califano, the U.S. Secretary of Health, Education and Welfare refused to sign the regulations that were needed to make Section 504 of the Rehabilitation Act of 1973 into law. Section 504 prohibited any entity from receiving public funding if they discriminated against persons with disabilities. Both the Nixon and Ford administrations refused to move ahead with the legislation because of the potential costs to hospitals and government buildings. So Judith, along with many others organized sit-ins across the United States. Califano signed the regulations and 504 became law. 

As the disability rights movement grew there were more protections added: the Americans with Disabilities Act was passed in 1990. Judith was named Assistant Secretary of the Office of Special Education and Rehabilitation Services from 1993 to 2001. Among other positions she has held, she was appointed by President Obama as Special Advisor on International Disability Rights in 2010, and has been a Senior Fellow at the Ford Foundation from 2017 to 2019.  

In Fighting For Yes, Judith Heumann demonstrates how one person can make a significant difference, by having the courage to fight for what they believe in. Fear and lack of understanding about disabilities resulted in discrimination that removed the most basic of rights such as attending school, and being able to access basic amenities like libraries, theatres and government buildings. Judith wasn't willing to accept this and became a tireless disabilities rights activist. Fighting For Yes focuses on her determination to get several important pieces of legislation passed, including Section 504. Despite all that she has achieved, Judith knows that there is still much work to be done to make life easier and more accessible for those with disabilities. 

Illustrator Vivien Mildenberger has portrayed Judith's story using gauche and digital media. The back matter contains a Note From Judith Heumann, an Author's Note and an offering of Selected Sources.

 

Judith's TED talk, given in 2016 is highly recommended. Her website is Judith Heumann.

Book Details:

Fighting For Yes! The Story of Disability Rights Activist Judith Heummann by Maryann Cocca-Lefler
New York: Abrams Books For Young Readers         2022

What Happened To Ivy by Kathy Stinson

David Burke's eleven year old sister, Ivy, suffers from cerebral palsy and is wheel chair bound. Everything in his family's life revolves around Ivy, who needs round-the-clock care. Things weren't always like this for David's family. His father, who is a Classics professor, used to take him to the museum. At the cottage he went fishing with his dad. 

However, after Ivy began suffering from seizures following surgery at age eight, her deteriorating health has meant that David's life has changed drastically. Ivy now needs diapers and uses a wheelchair. His parents are consumed with all aspects of Ivy's care and she's due for another surgery to correct her spine soon.

All fifteen- year-old David wants is a normal life, where he can do things with his dad, where things don't always revolve around Ivy and maybe where he can even have a girlfriend some day. David begins a friendship with the new girl who's moved in across the street from him only three weeks earlier. Hannah is sweet and seems to like David and she's good with Ivy. David was worried Ivy would drive Hannah away but she seems to enjoy sharing David with Ivy.

When David's parents invite Hannah to come along on the family trip to the cottage David is thrilled. Up at the cottage though, David's father seems very stressed out. One day Hannah and David walk into town to get a few groceries, but when they return they find that Ivy has had an accident while swimming with her dad.

After Ivy's funeral people begin talking about what happened and there are rumours that Ivy's death was not as it seemed. Eventually David is confronted with the awful possibility that Ivy's death may not have been an accident when his father confesses one night to the family that he didn't try to save Ivy. 

Discussion

What Happened To Ivy explores the issue of mercy killing, specifically the killing of the children with disabilities. Initially it is believed that David's sister, Ivy has died as a result of a swimming accident. However, David, along with his family learn that his father did not try to save Ivy but simply allowed her to drown. This revelation by his father is devastating.

In confronting the reality of what has happened, David must work through not only his grief but his feelings of resentment and guilt. While dealing with his grief David discovers he must also deal with his guilt over Ivy. Many times David was resentful towards Ivy and the difficulties her disabilities created. "I loved Ivy, too. But I bet she didn't know it. Besides all the times I didn't speak up for her -- like today, which was nothing compared to sometimes -- there were the times I did worse than not speak up for her." In reflecting on what his father has done, David attempts to reconcile what his father did with the care and comfort he gave Ivy throughout her life. "Last night, was Dad trying to say he did what he did because he loved Ivy? How is that supposed to make sense? I'd sure never try to claim I fed her those worms because I loved her."  

Among the questions David asks himself are, What makes a person's life worth living? And how do we know whether or not that life is a good one? "Or was Ivy's life tougher than I ever let myself believe? How do you weigh crappy stuff like seizures and physio and people hardly ever understanding you, up against giggles and grins and just being happy with birds and pretty flowers and your sunhat and your turquoise bathing suit? How can anyone know whether someone else's life is worth living or not, especially if that someone can't tell you about it?"

David has an interesting discussion with his elderly neighbour, Will, who is now in a nursing home. When David tells Will that his father let Ivy die, Will tells him that he wished he had the courage to "do something for my Vera" implying that the courage is in mercy killing rather than helping that person live better. But later on David questions this approach too. He recognizes that it is likely Ivy would have died eventually, if not in the lake, in the hospital - a place she hated. But he asks whether Ivy deserved to live life on her terms. "But even if it was like that - and maybe it wasn't - did that make it okay for Dad to do what he did? To decide - whatever made him decide - that her life would now end? Sure, she's free of all the crap life handed her. But didn't she deserve more chances to splash in her bath and laugh at Shamus's tricks? To talk to the birds and east orange gummy bears? "

In the end, David doesn't seem to know whether what his father did was right or wrong. When a witness comes forward to say that they saw what happened that day at the lake, David's father is taken in for questioning. So What Happened to Ivy ends with the question of Ivy's death unresolved.

This book attempts to address the thorny issue of mercy killing and does so reasonably well, but leaves the question open for the reader to decide. Predictably it leaves out the important point that there are usually options to murdering a person who is disabled and suffering. While Stinson does tackle the quality of life issue rather well, what is never discussed in the book are the options that might have helped Ivy's family cope with her overwhelming medical problems so that her father might not have considered doing what he did. It seems her family either didn't give this much thought or outright dismissed their options, as evidenced by the brief mention of putting her into a group home, which is immediately rejected by her mother.

This short novel closely parallels the story of Robert Latimer who was convicted of second degree murder in the death of his disabled daughter Tracy. Although Latimer served seven years of a ten year sentence, he maintains that his premeditated act of euthanizing his daughter by carbon monoxide poisoning was an act of love. Latimer was portrayed in the media as a loving father who did not wish to see his daughter continue to suffer. Similarly, David's father is portrayed as a caring father, so much so, that Hannah, whose father has abandoned her, refuses to believe that David's father did anything wrong.

In Canada there have been several recent incidents of mercy killing and not surprisingly, we see the case being made for the euthanizing of the severely disabled, those terminally ill, and the elderly. As the Council of Canadians with Disabilities correctly states, "murder is not mercy".

Book Details:
What Happened To Ivy by Kathy Stinson
Toronto: Second Story Press     2012
146 pp.