Out of the shadows and into the light

Beate Sass photographs a parent brushing a son's teeth. Atlanta Journal-Constitution

Beate Sass photographs a mom brushing her son’s teeth.
Atlanta Journal-Constitution

The day-to-day lives of people with disabilities is not something that gets widespread attention.

Few of us ever see the parent brushing the son’s teeth or helping the daughter eat cereal.

Not many of us know a young person who has aged out of the public school system and has no prospects of getting a job because he has a disability. So he spends his days idle, bored and aimless.

These are images and situations that photographer Beate Sass knows well.  Beate, who lives in Georgia and has a daughter with disabilities, has decided to shine light on families like her own.

Invisible no more

She’s using her passion for photography to get more visibility for people like Donald and how, with appropriate services, he can lead a productive and fulfilling life.

She’s also drawing attention to individuals like Don and his parents, who are getting older and wondering how they will take care of their son.

Beate is on a mission to get the Georgia legislature to pass additional Medicaid waivers so that more people with disabilities can live independently and their families can have the support they need.

My hat’s off to Beate, who’s launched a website of images on the subject. She and I share the same mission — to bring people with disabilities and their families out of the shadows and into the light.

 

Just say ‘hi’ and make someone’s day

Family AffectionA few days ago, I was in a hotel lobby and walked by an older woman sitting in a wheelchair. She had a far-away look in her eyes that told me she was not very aware of her surroundings.

I said “hello” to her, as I would to anyone I passed by. She seemed somewhat taken aback and it took a moment for her to look in my direction and greet me. I thought it likely that it was rare for her to be acknowledged by strangers.

I have often thought that the elderly have much in common with people who have disabilities. They are “different,” and have special needs. So we send them to nursing homes and assisted living facilities where they live out their days in isolation.

The same is true for people who are poor. We sit in our cars at traffic lights and ignore the homeless person standing on the corner, wishing they would go to the shelter and stop asking for money.

More visibility

For many decades, we sent people with disabilities to live in isolated institutions in rural areas. Fortunately, that trend has reversed and most states are moving folks into home-like settings in residential neighborhoods.

As a result, it’s becoming more common to see people with disabilities in everyday situations. There’s the sacker with Down Syndrome at the grocery store. There’s the little boy with cerebral palsy moving haltingly down the aisle to his seat on an airplane. There’s the non-ambulatory girl being carried by her mother to the hotel dining room.

Even though people with disabilities are more visible, many people are uncertain as to how to react to them.  I noticed this when I would take Uncle Melrose, who had an intellectual disability, to McDonald’s or to other public places. Many folks – children especially — stared at his twisted back and small head.

But Melrose was delighted to be around people and in the mainstream of life. He waved at the people he passed and reveled in their company.

Expecting to be ignored

J. David Smith, who teaches in the Department of Specialized Education Services at the University of North Carolina at Greensboro, writes about his experiences interacting with people who live in group homes.

In Ignored, Shunned, and Invisible: How the Label “Retarded” has Denied Freedom and Dignity to Millions, Smith writes that the people he encountered seemed to expect to be ignored.

“As I approached the front entrance (of the home), I met the gaze of people sitting on the porch and standing on the lawn and around the doorway. As I have found in similar places, they appeared to be surprised, if not startled, when I spoke to them. They seemed to expect that they would be unnoticed, not seen, to be socially invisible…

“The real problem of being African American, or poor, or old, or having an intellectual disability in the United States lies in not being seen as an individual human being.”

No one likes to be ignored, no matter who we are or what condition we’re in. So say “hello” to the next elderly or poor or disabled person you run across. Regardless of whether they respond or not, you’ll make their day.

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.

Making Best Buddies

Nicole Sonnier
Best Buddies

After writing in my last post about Best Buddies, I asked Nicole Sonnier, Texas state director, to tell us more about this wonderful organization.

What is the purpose of Best Buddies?

Our mission is to provide long-lasting relationships between people who have intellectual disabilities and those who do not.

How did Best Buddies get started?

The organization was started by Anthony Kennedy Shriver, son of Eunice Kennedy Shriver, who founded the Special Olympics. The Kennedys, of course, have a long history of working with people who have intellectual disabilities. Anthony grew up being very involved in Special Olympics and he observed the special friendships that occurred during the games. He thought about the impact of year-round friendships and how they would make a difference in the lives of people with intellectual and developmental disabilities.

When he was a student in college at Georgetown he got a bunch of his friends together and they went and visited institutions. He told his friends he was sure they had a lot in common with the residents of those institutions. They took the residents out to movies and baseball games. They made actual true friendships. A lot of those friendships are still in existence today. After college, Anthony went nationwide to other colleges and high schools and started Best Buddies chapters and today, there are more than 1500 Best Buddy chapters across the United States and we’ve expanded to 18 countries.

How does Best Buddies work?

The Buddies are the students who have the intellectual disabilities. Typical students are called Peer Buddies. We match them according to their interests. We have a match party every year at the beginning of the school year. There are officers for that chapter and they talk about what the chapter is going to do as a group and they talk about what the requirements are for members. They must have an activity together one- to-one at least once a week – that can be sitting together at lunch or going to the movies and they have to spend time with their Buddy even outside the school. We want it to be something that’s long-term.

Can you talk about inclusion and how important that is to the Best Buddies mission?

Our mission is of course inclusion. We have found that in so many schools now we actually see the kids in the special ed classes in a separate wing. The special ed kids come in through a separate door and the other kids never see them. And so now, because of Best Buddies, those kids are no longer kept isolated. They are actually out in the commons area and they are mingling with their Peer Buddies in the lunchroom and at school dances. It’s really been great for the typical students to see the abilities of the students that are special ed students. And it’s great for the special ed students so they can have friendships with people other than their caregivers and parents and teachers.

The ultimate goal of Best Buddies is total inclusion – social inclusion and educational inclusion. To expose the public to individuals, children and adults, to expose them to the world so people can stop seeing them as individuals with disabilities and see them as people who have a lot to contribute.

Out of this kind of inclusion, we’re hoping many of our students will become long-term advocates. When those students grow up, they might grow up to form a company that hires people with intellectual disabilities.