Thomas Pomeranz knows he’s making a big ask when he tells parents to talk to their special needs kids about their differences, but he’s seen what a powerful impact it can make.
His granddaughter was diagnosed with Tourette syndrome when she was 7 years old. Soon afterward, Pomeranz and his daughter explained that was why the young girl couldn’t stop herself from sneezing, blinking, jerking her head or making odd noises when she sensed them approach.
“Isabelle turned to us and said, ‘Does that mean I’m not a bad girl?’” Pomeranz said.
Isabelle asked her mom to visit school and tell her classmates why she behaved the way she did – a practice the family repeated every year since.
“It takes the weight of the world off her shoulders,” Pomeranz said.
Pomeranz, 70, of Indianapolis, holds degrees in the field of intellectual disabilities, as well as a doctorate in special education administration. He specializes in training staff who support people who are medically and intellectually fragile. He routinely consults with dozens of agencies across the country, including more than a half-dozen in Western New York.
Q. What helped you decide how you wanted to spend your career?
At 12, I had a condition where both hips became dislocated and required four major operations with Smith Petersen pins and nails in both legs and a very extended hospitalization. I was unable to walk when I got out. The thing that was most salient for me was losing my relationship with my same age peers. Because schools were not accessible back then I ended up in a segregated school intended solely for kids with special needs and ended up going to a special camp for the summer – and disliked immensely how I felt and was treated. I thought that I could do better in terms of enhancing the quality of life for people with disabilities. I went to college with that focus and this is all I've done during my professional career.
Q. Can you talk about the impact of the Americans with Disabilities Act of 1990?
People think the ADA was about cutting curbs, widening door frames and expanding bathroom stalls. They were really, really wrong. Who cares whether the door frame is expanded and the child can get their wheelchair through the door if after they get through it, no one wants them to be there and they’re not valued? From my perspective, ADA is really about opening arms, hearts and minds.
When people don’t know people, they tend not to trust people and when people don’t trust, they don’t help. By having a physical presence in promoting opportunities for integration of people and kids with special needs, it will change the hearts and minds of our community. That’s what’s important.
Q. How do you see your role?
First and foremost as a civil rights advocate for people with developmental disabilities. I’m always encouraging everyone who I train that when you look at the people who you support, do not see them. See yourself. And ask, “How would you want to be treated under a similar set of circumstances?” You want to cause people to have a sense of “dis-ease.” It’s that dis-ease that is the motivator for us to be introspective and make some decisions about how we need to conduct ourselves to enhance the quality of life for these folks.
Q. How can parents, families and educators help advocate?
What’s really important is what we do and not what we say. Let’s talk about four bullet points.
The first bullet point that’s really critical is having families and teachers celebrate who people are. You can’t do that unless you have an honest discussion with children from the earliest point possible in their lives that “you have an intellectual disability. It’s not who you are. You’re not your diagnosis. You’re a good person.”
We can’t send people out into the world with an inability to advocate for themselves, whether it’s their inability to recognize that other people are talking about them, in front of them, as if they’re not there or coming over to them and patting them on the head as if they were a little child, or using words of endearment that would not be used – “Hi, honey.” “Hi sweetie” – under any other set of circumstances. … People who treat people with disabilities that way are not mean-spirited. They’re ignorant. To me, ignorance is good news. I’ve got a cure for ignorance. We educate people.
The next bullet point: At all costs, these children must look good in the eyes of others. When they’re sent to school by parents, they have to look as good or better than any other typically developing child of that same age. That’s seldom the case. Parents of a 10-year-old with developmental disabilities have to ask themselves, “What does a typical 10-year-old boy look like? How is he dressed? What is his hairstyle?” … If parents want their children to be treated with dignity and respect, they need to present themselves that way.
Number 3: We want to provide and advocate for inclusive opportunities in a child’s life. From the parent’s prospective, that’s how they can have their child integrated into regular Boy Scouts or Girl Scouts. How they can attend a regular Sunday school class, not a special Sunday School class, whatever it may be. Whenever you hear the word “special,” substitute the word “segregated.” It works perfectly every time. What we have to figure out is how these kids can have inclusive, or integrative, opportunities so they can have relationships with other children who do not have disabilities. That’s perhaps one of the most important and significant contributions children with disabilities can make, by, through their presence, changing the hearts and minds of their community ... so they can see disability as part of the human condition and not something that is exceptional.
Fourth: Teach the child how to advocate for themselves in a way that is sensitive and appropriate. Any parent of any child for whom they think there may be a societal prejudice – whether based upon color of skin, religious belief, country of orientation, sexual orientation – will want to explain to their children how prejudiced people may act – the words or phrases that those people might say – and that parent provides that child the tools on what to say to protect them from that kind of conduct. We tend not to do that with children with intellectual disabilities and other developmental disabilities. We tend to throw them to the wolves.
Twitter: @BNrefresh, @ScottBScanlon