Good News!

Advocate, Community Participation, Disability, Down Syndrome, Education, Inspiration, Siblings No Comments »
Jane and Billy Schulz heard good news about Rosa's Law.

Jane and Billy Schulz heard good news about Rosa's Law.

U. S. Senator Barbara A. Mikulski from Maryland announced that her bill introduced to eliminate the terms “mental retardation” and “mentally retarded” from federal education,  health and labor laws passed the Senate on Thursday night by unanimous consent.

This is big!

For months people have been blogging, emailing, and twittering about the misuse of the “R” word. If you would like the background and my response to this effort, you may look at my earlier blog on the “R” word.

Called “Rosa’s Law,” the bill changes the phrase “mentally retarded” to “an individual with an intellectual disability” in health,  education and labor law. Senator Mike Enzi, a co-sponsor of the bill, states that “The bill is simple in nature but profound in what it will do when it is enacted. For far too long we have used hurtful words like ‘mental retardation’ or ‘ MR’ in our federal statutes to refer to those living with intellectual disabilities. While the way people feel is important, the way people are treated is equally important. Rosa’s Law will make a greatly-needed change that should have been made well before today – and it will encourage us to treat people the way they would like to be treated.”

The passage of this law does not guarantee that people will cease to use pejorative terms to describe those who have disabilities, but it is a start. Local and federal agencies will be required to use the new term, as will school personnel. I remember, as a special educator, having to inform parents that their child had been identified as having mental retardation; I also remember their reactions. I hope that this new term will be kinder and more readily accepted. However, there will always be a need to insure that children with disabilities of any kind are treated with respect, regardless of the label used.

I think the most important aspect of this law is the way it was initiated and voted into law. The inspiration for the law came from the actions of a family whose daughter, Rosa, was diagnosed with Down syndrome and labeled retarded at school. The mother teamed up with other parents and her state delegate to introduce a bill to change the terminology in her home state law. A hearing on the implications of changing the law was held prior to consideration at the Maryland  General Assembly.

At the hearing, the testimony that had the greatest impact was given by Rosa’s 11-year-old brother. He said “What you call people is how you treat them. What you call my sister is how you will treat her. If you believe she’s ‘retarded,’ it invites taunting, stigma. It invites bullying and it also invites the slammed doors of being treated with respect and dignity.”

This story is a perfect example of effective citizen advocacy, according to Senator Mikulski. She said that this family “pulled together to pull us all to another way of thinking. They fought for the respect and dignity of a loved one. The more than 6 million people with intellectual disabilities in America deserve that same respect and dignity.”

A similar bill has been introduced in the House and has 63 co-sponsors. The law does not affect any services, rights, responsibilities or educational opportunities for people with intellectual disabilities.

There is no end to what we can accomplish when we pull together!

Do you think this law will make a difference?

Independent Living (Part 1)

Advocate, Community Participation, Diversity, Education, Independent Living, People with Disabilities, Special Education, Teaching No Comments »

It is easy to forget that one method of housing for people with disabilities is still institutionalization in state facilities. Although this arrangement is gradually disappearing, it is still the only choice for many families due to lack of resources, family dysfunction, or other reasons.

Two years ago I was dismayed to learn of an event occurring in a state institution for persons with disabilities. The following article was, and is, my reaction.

Return of an Outrage

After five decades of observing, I thought it was over. I had hoped we would never again see headlines like the one dated March 27 on NPR.org: Abuse at Texas Institutions Is Beyond ‘Fight Club.’ The article described events in which staff members were charged with taking part in staging “human cockfights,” using residents with mental retardation for staff entertainment. Chronicled on a lost but retrieved cell phone, the evidence pointed to more than a year of staged late-night fights, some as recent as this past January, at the Corpus Christi institution.

My rekindled anger took me back to the 1960s, to revelations that changed my life. The first experience was made more real to me because of my son Billy, who has Down syndrome. I had just begun pursuing my goal to become a special education teacher. I wrote:

During that first summer, my class visited various facilities supposedly designed to educate children with mental retardation. A major event was the trip to Partlow, a residential institution operated by the state of Alabama. . . As a group, we walked into one expansive barn-like room, furnished with two long benches facing each other, no other furniture in the room, no curtains on the cloudy windows, and absolutely no stimulation of any kind. I stopped in the doorway, mesmerized by boys appearing to be around the age of ten or twelve, hands by their sides, staring blankly about them. This image was my nightmare for months to come, an image still present in my mind. I was so struck with the horror of “nothing to do” that I swore to myself, “That will never happen to my little boy.”

The second event occurred as I was progressing in my studies in mental retardation; I was shaken and outraged by the disclosure of conditions at Willowbrook, a Staten Island institution for children with mental retardation. Not only were children abused and living in squalor with little medical or mental health care, some of them were reportedly used as test cases for hepatitis studies. The nation as a whole was appalled when a young investigator, Geraldo Rivera, went into the institution with a hidden camera and revealed the unthinkable conditions at Willowbrook.

The Willowbrook expose was followed by a book written by Burton Blatt and Fred Kaplan, entitled Christmas in Purgatory: A Photographic Essay On Mental Retardation. As part of a research project at a Connecticut facility for persons with mental retardation, this book presented explicit photographs of residents being treated “less humanely, with less care, and under more deplorable conditions than animals.” In the Introduction, Dr. Blatt stated, “There is a hell on earth, and in America there is a special inferno. We were visitors there during Christmas, 1965.”

As a student, I felt sure that these dramatic disclosures would demand that residential institutions be carefully monitored and the persons living in them treated with dignity and kindness. The sad truth did not bear out my optimism.

When I became a professor in special education in the early 1970s, I took a group of students to visit a residential institution not far from our university. Although this was considered a model facility by many, my students and I witnessed an appalling procedure. As we were touring the grounds, we observed a fenced-in area where a large group of naked young men were being hosed off by attendants. We were appalled at the lack of dignity afforded these residents.

Almost half a century later we are still confronted with atrocities perpetrated on those persons most vulnerable in our society. Sure, in response to the article concerning abuse at the Corpus Christi institution, Texas state officials have announced steps to prevent more abuse. They intend to add supervisors to evening shifts, install security cameras in public areas at all 13 state institutions for people with intellectual disabilities, and to “continue to take swift and immediate action when abuse and neglect is reported.” But we know this does not address the real problem.

Originally placed in out-of-the way places, residential institutions were designed to protect the residents as well as the community. Such isolation seems to breed neglect and abuse that go unnoticed by citizens at large. The claim that this practice is less expensive for the state is not a valid reason for the continuation of such large, unmanageable facilities.

I have felt encouraged by the national trend leading to group homes, supervised apartments, family-supervised living, and other arrangements for people with developmental disabilities to live in communities and enjoy the rights of all citizens. In districts where this occurs, the population as a whole grows in many ways. The inclusion of persons with disabilities adds to the sense of diversity that makes us interested in each other and helps us develop sensitivity to the worth of all individuals.

The Texas incident reminds me that we must all be advocates for those less able to advocate for themselves. As advocates, we should be aware of past injustices, learn from our experiences, and be proactive in seeing that the past will not be repeated.

In future blogs we will examine alternatives to institutionalization. We will have several guest  bloggers who will describe solutions that offer favorable living situations for their family member who has a disability.

What solutions have you found or learned about? What questions or concerns do you have? Share with us!

On My Soap Box

Adults with Down Syndrome, Advocate, Down Syndrome, Education, Family Challenges, Inclusion, Parents, People with Disabilities, Special Education 3 Comments »


Almost 50 years ago my son Billy was denied entrance into a special education school because he wasn’t 8 years old. We enrolled him in a regular kindergarten class where he blossomed as he interacted with non-disabled children. That started my firm belief in inclusion of children with disabilities into regular classes. After he entered the special school, I continued to seek opportunities for him to participate in non-segregated situations.

I belong to the generation of parents who fought for Public Law 94-142, the Education for All Handicapped Children Act (later amended to be called the Individuals with Disabilities Education Act or IDEA). I gladly joined other parents in pushing for this legislation and rejoicing in its passage. Although it was implemented the year that Billy graduated from high school, I knew that many other children would benefit from its mandates.

The principle of PL 94-142 that is used for the rationale for inclusion of students with disabilities into regular classrooms is referred to as Least Restrictive Environment. The mandate states that “To the maximum extent appropriate children with disabilities… are educated with children who are nondisabled…”

Thus it pained me to read the blog of a mother whose child has been denied the benefit of inclusion. Her daughter, who has Down syndrome, had a successful year in kindergarten. It was determined by the mother and the teacher that repeating kindergarten would benefit the child and the Individualized Education Plan was developed on that premise. At the meeting to plan goals for the coming school year, the mother was informed that her child would be placed in a special class for children with severe disabilities (a living skills class) and would not be engaged in any academic activities.

There is an involved process where parents can dispute the decision of the school personnel regarding placement of a child who has disabilities. This parent went through the legal process and was so disappointed and enraged with the school’s point of view that she gave up the fight and decided to home school her daughter.

Research and experience clearly demonstrate that children with disabilities learn more when included in regular classrooms, where they have normal patterns of speech, behavior, and learning to emulate. I believe in this so strongly that I am disappointed in the outcome of this particular case. To add to my dismay, 95 people have commented on this blog, mostly to applaud this mother’s decision.

I must make a plea to these parents who choose not to pursue their rights. If we do not insist on the mandates of IDEA being followed, they WILL disappear. Please, families, stay the course – insist on the best situation for your child. If the school disagrees with you, the success of your child will change their views.

There are many teachers and administrators who are diligent in insuring that children with disabilities are placed in the least restrictive environment and are receiving the services to which they are entitled. These professionals are concerned with providing the best education possible to ALL children.

I’m sure that on Billy’s file there was a stamp that read “Pushy Parent.” Believe me, if I had it to do over, I would have pushed harder. We must be proactive if we wish to secure the rights for our children to have the best education possible.

Welcome to the Grown Man Now blog!

Community Participation, Down Syndrome, Education, Mother of an Adult with a Disability, People with Disabilities 20 Comments »

We have been writing on blogspot and have decided to bring our blog directly to our website. Click on this image or the tabs above to explore the rest of the site, and come back to talk to us!

A screen capture from the Grown Man Now website.

Read Billy Schulz's blogs: "I Got a Good Life"

SHOUT!

Adults with Down Syndrome, Community Participation, Diversity, Down Syndrome, Education, Inclusion, People with Disabilities, Uncategorized 4 Comments »


While equal opportunity employment is a vital element in the inclusion of persons with disabilities into the community, there are other important ways to help accomplish this goal. An organization called SHOUT (Students Helping Others Understand Tomorrow) makes a concerted effort to introduce diverse groups of people to selected high school students.

SHOUT is sponsored by the Kingsport Chamber of Commerce and is designed to inform future leaders of possibilities for service in the area. For several years, Billy and I have been asked to meet with the group on Diversity Day, one of the five categories in the program. One of the stated goals for this session is: “To initiate, foster, and promote an understanding and appreciation for all people and their unique perspectives and contributions to the world.”

My thrust is the development of attitudes from tolerance to acceptance to celebration of diversity. Billy shows his slides, pointing out the normalcy of his life and the importance of his family. His real message, however takes place during his interaction with the students at lunch time and after the program. Initially reticent, they find that he is easy to talk with and fun to be around. Evaluations referred to it as “an eye-opening day,” stating, “Billy was awesome; it was definitely an amazing experience.” In planning their graduation ceremony, the students asked that Billy hand out their certificates. On the appropriate night Billy, dressed in suit and tie, shook hands and gave out certificates to all the students. At the end of the program, students write letters to thank the session leaders. One letter addressed to me read:

We were very privileged to have you speak to us on Diversity Day. Your presentation was a touching and heartwarming experience. Not only did you show us that you should not be ashamed of or try to hide your differences, but you urged everyone to CELEBRATE what makes them special. I think nearly everyone can agree with you that Billy has a way of teaching people that no one else is capable of. He has an extraordinary gift and that is something to celebrate.On behalf of everyone in the SHOUT program, thank you. We were blessed to have you!

It is a joyful opportunity to be involved with this group – future parents, professionals, and employers.

Do you know of community organizations that encourage and promote the inclusion of people with disabilities? Is there potential in any of your social organizations to develop such ideals?

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