If someone had asked me to walk in a Disability Pride Parade 12 years ago when my son was born with special needs, I would have immediately felt like I was going to be sick. I might have started crying and then would have given a resounding, “not in a million years.”
Coming to terms with accepting that my child had special needs, let alone blasting it out to the world in a very public way, literally parading him around NYC, was something that seemed unfathomable to me. It basically meant we were different from everyone else, and not in a good way. It meant putting him at risk of being ridiculed. It meant exposing our private lives to strangers who had no business knowing about all of our pain and hardships. It meant feeling alone and isolated. It meant fear and sadness.
Time does not heal all wounds but I can honestly say that, as cliche as it sounds, the pain becomes less intense. Fortunately, time also allows for many incredible experiences to occur, some organically and some forced, but they happen nonetheless.
For example, you learn to get to know your child as a person and not just as their disability. You get to see how fortunate you are that there are really cool things about your child, like bravery, compassion, empathy, kindness and strength. You also get to see those features in other families whom you are given the opportunity to socialize and depend on for your mental health. You get to realize how phenomenal these families and caretakers are and you eventually get to a point where you can’t even imagine not having the life you have, as hard as it sometimes is.
So this is why, 12 years later, not only did I say “YES!” when asked if I was going to participate in the Disability Pride Parade, but I truly looked forward to going and was proud to be there. Hanging out with all the people who get their act together every day with all their challenges and still love life and smile?
Walk down the streets of NYC, all hot and sweaty in 90 degree weather with caretakers and family members who are so proud of the accomplishments of these important and loved people in their lives?
You better believe it!
There’s nothing like it and I’m not the only one who feels that way. Annika Cioffi attended this year with her husband and two daughters, one of whom has autism. When asked how it felt as parents to be attending the parade, she responded,
“We are very glad to have attended. As a parent, being a part of something that shows advocacy for your child is a wonderful gesture and somewhat of a relief to have a feeling of belonging for a change. “
Because some families may have conflicting emotions about an event such as this, I asked what she would tell families who are considering attending in the future.
“Everyone has their challenges in this life, and PWD’s (People with Disabilities) are no different. The difference often is their attitude about life… along with the usual challenges, they experience challenges such as having to make sure there is a bathroom they can use before they make evening plans. Having to make such provisions on top of regular life “stuff” you might think would create bitterness in a person, but most often you find quite the opposite. These folks are often the kindest and most ‘generous of spirit’ people you will meet. Go to the parade in 2017 and meet a few of them along your way… Walk among them and you’ll see for yourself.”
Mitzila and Glenn Myles of Bloomfield felt strongly about attending the parade.
“The parade allowed for the opportunity to have society learn and be more open and sensitive. It also allowed families that have a child with a disability to know what is out there for their kids such as services, activities, family support groups and more. Finally it allowed our legislators to see how many of us there are and this may help them make better laws that can protect our children. Just seeing all those young kids with their families and adults helping each other was so encouraging. It made me feel that there are people who care. Having a disability is not as taboo as it was.”
Another local woman, Iris Mehler attended with her family of four, her mother and her daughter’s service dog. Acknowledging that this was only the second year of the parade, Ms. Mehler hopes to see a bigger turnout next year and hopes that they change the name to The Abilities Pride Parade which is much more positive. Asked why the parade was important to her, she replied:
“Today, one in four people 20 years old and over will experience a disability before they retire. This parade really does and could encompass everyone. There is a social and political obligation for people to attend, especially since there are so many people with severe disabilities who cannot attend. Having universal access will benefit everyone at some point in our lives. People with disabilities are the last minority and there is still so much to do and so little awareness. New York being so large could make a huge impact in society if more people participated.”
Ms. Mehler’s eight year old daughter who uses a wheelchair enjoyed seeing so many others using wheelchairs as well. She went on to say that “the parade created a sense of belonging and more people attending would show that we are not alone; together we are stronger.”
We hope to see you at the parade in 2017! For more information about the parade, go to https://disabilitypridenyc.org/