Archives for April 2013

Why unemployment is higher than we think

Diane paints a ceramic piece at Brookwood.

Diane paints a ceramic piece at Brookwood.

“We give folks meaningful work and something to look forward to.”  Travis Duncan, Development Officer, Brookwood Community

 

When I heard Travis say those words on a tour of the Brookwood community last week, I couldn’t help but think of my Uncle Melrose and how he would have welcomed meaningful work.  Instead, he spent decades in an institution and had countless days of boredom and inactivity.

Thankfully, the world has changed dramatically in the past 50 years, and places like Brookwood near Houston are showing us what people with disabilities can do if given the chance.

A purpose in life

Brookwood offers meaningful jobs and a sense of belonging to adults with disabilities. It is home to 105 individuals, some of whom live in houses on the grounds and others who live in dorm-like settings on campus. In addition, 83 others live elsewhere but come to Brookwood to work every day.

The workers produce pottery, plants, greeting cards and food items for sale in the Brookwood store. Proceeds from these sales pay for almost half the cost of running the community.  The rest of the funding comes from tuition and donations.

As I toured the workshops, I was struck by how happy everyone seemed.  Diane, who was painting a ceramic piece, told me it was her first day in the shop. But you wouldn’t know it by the professional job she was doing.

Putting people to work

“A lot of our men and women have only been told what they can’t do,” Travis said. “Here at Brookwood, we find out what people can do and put them to work using their skills.”

Believe it or not, the same thing used to be the case at the farm colony where Uncle Melrose lived for almost 40 years. When he first moved there in 1956, the Austin State School Farm Colony was a working farm and dairy.

Even though my uncle had a profound intellectual disability, he was able to do some kind of work. A former staff member speculated that Uncle Melrose may have done something in the cannery, where the crops were canned and packaged for consumption at other institutions.

Whatever he did, he had fond memories of those days when he had a job to do. I asked him one time if he had ever worked with chickens on the farm, and he responded with greater than usual enthusiasm that he had.

Abuses led to idle time for all

Unfortunately for Uncle Melrose and thousands of other residents like him, the free labor they provided was considered somewhat exploitive – especially for the more able-bodied among them. Higher functioning individuals were assigned to bathe, feed and dress the less capable residents. Some worked in the laundry and in the kitchen.

It wasn’t affordable for the state to pay these workers, and so they worked for free until the courts ruled in 1974 that they were entitled to protections under the Fair Labor Standards Act.

This was a tragedy for Uncle Melrose, who then lived the next 20 years with too much idle time and no sense of purpose in life.  I wish he could have gone to a Brookwood, where they would have put him to work emptying trash cans – one of his favorite activities.

How I sold my uncle short

Theatrical masksThe tragic deaths and injuries at the Boston Marathon bring to mind how hard it is to talk about difficult subjects to people who have intellectual disabilities. I struggled with this issue as I developed a friendship with my Uncle Melrose, who had a profound intellectual disability.

Because he could say only a few words, it was not possible to have a conversation with him or to find out if he understood what I was saying. I could ask him a question, but he often could not respond.

When my dad, Melrose’s brother, died, I thought about taking my uncle to the funeral, but my family counseled against it.  He wouldn’t understand what was happening, they said.

Shielding my uncle – was it the right thing?

To some extent, that was probably true. After his mother died in 1943, Melrose kept asking where she was. I don’t know if he went to her funeral, but my guess is that he did not. I don’t know if he ever saw her in her sick bed when she was dying of cancer. By the time she fell ill, he was living in an institution.

I worried over whether I should tell my uncle that his brother had died, and in the end decided against it. It was so hard to know what Melrose understood and how such news might affect him. He had no coping mechanisms for grief and I didn’t want to cause him anguish.

But I have some clues as to how much he could relate to feelings of sadness. He had a reputation for being concerned about his dorm-mates and housemates who were sick. He often sat at their bedside, just to be with them while they were ill.

My uncle understood death

After Dad died, he and I went to the funeral of one of his housemates. It was a beautiful service and Melrose seemed genuinely moved by the experience. In this case, I am sure he understood that his friend Arthur was gone and would not return to the home they shared.

Perhaps my uncle had a better understanding because he was able to be there and see Arthur through his declining days. Perhaps he could grasp the situation because he saw his friend being carried out of the house on a stretcher.

I’ll never know the answers to these puzzles. What I do know is that Uncle Melrose had a very high emotional IQ. He loved with complete abandon and accepted others without reservation. He loved to hug his friends and he just liked being with the people he cared about.

Don’t sell folks short

So I probably sold him short. I know we all sold him – and ourselves — short by not allowing him to be a part of our family experience.  Hiding the truth from those we want to protect is not always the respectful thing to do.

I hope that conclusion is not lost on those who are charged with sharing the news about the Boston Marathon tragedy with people who might have difficulty understanding it.

How I got on the bully pulpit

“I don’t think the worst thing that could happen to me is raising a child with special needs.  I think the worst thing is to raise a child who is cruel to those with special needs.”

Stop-Bullying smallThese are the words of a man named Joseph, who has a son with multiple health and disability challenges. Joseph writes on his blog Undiagnosed that his biggest fear is that one day his son Braxton will go to school and be the target of bullying by other kids.

I’m sure this same fear plagues all parents, but especially those who have kids with special needs.

Bullying is very common among young children. Experts say at least 10 percent of children are tormented by their peers.  I was one of the unlucky 10 percent when I was in elementary school, and I can still recall the sharp pain I felt at being mistreated by other kids.

Uncle Melrose got bullied

My Uncle Melrose, who had an intellectual disability, was bullied as a child. Other kids in his neighborhood taught him to say curse words and they physically challenged him. My dad, Melrose’s brother, defended him.

It is hard to describe the pain and shame a child feels after being bullied. I can’t begin to comprehend how a special needs child, who has fewer coping tools than I did as a youngster, can deal with this kind of abuse.

When it comes to children with disabilities, it occurs to me that their best allies against persecution are their parents, teachers and other advocates. Adults who have an understanding of and empathy for children with disabilities can model and teach respectful behavior.

Mainstreaming and inclusion are also beneficial. Children may be less likely to ridicule if they are familiar with and have an understanding of another’s frailties.

Children need more exposure to disabilities

This fact was brought home to me by a young father who heard me speak about my relationship with Uncle Melrose. I had delivered the same presentation several weeks before and this man and his 10-year-old son were in the audience for that earlier talk.

The father told me that the speech had a big impact on his son, who told his friends and relatives about it.  I don’t know this for sure, but I suspect this boy hadn’t been exposed to such a personal story about disabilities.

The father suggested I consider giving my presentation to groups of children and that idea intrigues me.  After all, my purpose in writing about Uncle Melrose was to let the world know what a great guy he was. Perhaps my talk can have an impact on youngsters who have had little to no exposure to the world of disabilities.

What do you think? If you have any ideas or suggestions on where I might talk about my friendship with my Uncle Melrose in front of children, I’d be interested in hearing them.

How people with disabilities can transform your life

215px-Rain_Man_posterI’ve been going to a lot of movies lately, watching everything from dramas to science fiction to  stories of historical events and even tales of the mystical and fantasy. But I have to admit that I am particularly moved by films that inspire me, and I haven’t seen a movie that does that in quite some time.

One such motion picture that fit the bill for me (and goes along with the theme of National Autism Awareness Month) was Rain Man, starring Dustin Hoffman and Tom Cruise. This 1988 film is about a man (Raymond Babbitt played by Dustin Hoffman) who is both autistic and a savant.

Tom Cruise plays Hoffman’s brother Charlie Babbitt, who does not know he has a brother until after their father’s death. The father’s will leaves almost the entire estate to Raymond, who has lived in an institution since he was a child. The movie is mostly about Charlie’s attempt to get a share of the money.

Focus on autism

Charlie also uses Raymond’s skills at card counting to win money at casinos in Las Vegas. The film is partially accurate in its portrayal of autism. Raymond is a creature of habit, demanding fish sticks on a certain night every week and insisting on watching the Jeopardy game show every day when it comes on television.

He also exhibits rocking behavior and does not establish eye contact with others — both symptoms of autism.

But as experts point out, not all who have autism exhibit the characteristics Raymond has. There are many manifestations of autism and those who have it can land anywhere on the broad autism spectrum.

Rain Man was important because it shed light on the subject of autism at a time when it wasn’t a widely discussed human condition. It was also important because it showed how people with disabilities – even severe ones — can have a powerful impact on others.

People like Raymond have much to offer

In the case of this film, Charlie starts out trying to use his brother to get money. After many adventures together, Charlie learns to love and accept his brother and transforms from a user to a caretaker.

This is the message that I find so inspiring in Rain Man. It is the same message I learned from my Uncle Melrose, who had an intellectual disability. I found that if I spent time with him and honored his needs – even though they didn’t match my own – that the rewards would be a sense of peace and the knowledge of his unconditional love.

The bottom line is this: People who have disabilities can have a transformative effect on those around them. It’s just up to those of us around them to pay attention and learn the lessons they can teach us.