Finding Our Disabled Community

My son, Aleck Persin, is disabled.  It has taken me 8 years and about an hour and a half to type this sentence.  My son, Aleck Persin, is disabled.  This isn’t an easy thing for me to say, to type, or to read.  I’ve done a wonderful job of avoiding this term as much as possible. My son, Aleck Persin, is disabled.  It’s freeing, isn’t it, repeating a statement that has scared me shitless for the last eight years.  A word that has made my toenails cringe even at the sight of it.  I’m tired of letting this word have so much power over me and I’m also tired of trying to pretend that Aleck is physically the same as his peers, because he isn’t and he never will be, and more importantly, that’s OK.  Yes, Aleck has “mobility issues” my usual go-to for describing Aleck, but at the end of the day, he is a part of the disabled community.

After his first major hip surgery when we were inpatients at the Rehabilitation Institute of Chicago (now the Shirley Ryan Ability Lab), the social worker secured us our first disability placard.  Holding it in my hand when it arrived I wondered how I would explain it to Aleck.  This figure in a wheelchair, at the time we didn’t know if he would be able to walk without assistance, that figure could be his future.  I didn’t want him to associate himself with this blue symbol, I didn’t want him to refer to himself as disabled, but that’s what it’s called, a disability placard for parking for the disabled.  Even though he was barely 12 months I didn’t want all of this to register in that incredibly advanced brain of his.  To me, accepting the disability felt like giving up, and I was filled with too much hope.  Hell, I was running on a sweet cocktail of hope, panic, and adrenalin, trying to accomplish as much as possible before he was three years old, a timeline given to us by doctors and therapists to get as much mobility into his life as humanly possible.

Since I’ve avoided the word “disabled” as a term for Aleck I was shocked when at the end of the year last year the most glorious letter came home written by Aleck’s 7th-grade buddy at the time, a darling red-headed girl with legs up to her chin and a mouth full of metal. But the very beginning of the letter struck me to the core.

            Dear Mr. and Mrs. Persin,

            One of the first times me and Aleck met I noticed a lot of people saying hi to him.  I said, “Oh, Aleck I didn’t know you were famous.” Aleck responded with “yeah, I’m famous.” I said, “what go you famous?” He said, “It’s because I am disabled.” That caught me off guard…

Yeah, that caught me off guard too.  She goes on to say what a huge impact he’s had in her life, “academically and emotionally” and how she believes he’s changed her life forever.  It’s really a beautiful letter that brings me to tears every time I read it.

The next day Craig and I sat down with Aleck and asked him about this conversation.  I was so thrown I barely heard what he said, all I remembered was what I said, “Aleck, you are famous because you say hello to everybody, you are warm and kind and funny and make people laugh.  That’s why everyone knows you.”  I’m pretty sure I didn’t slow down enough to get his take on using the word I dreaded so much, I’m pretty sure I tried to bury it all in a sea of my own monologue.

Then the most extraordinary project made its way into my professional life.  I was commissioned to create a series of portraits where I photographed people who are disabled in their daily environmental settings.  It was all for a report on accessibility and public transportation, or the lack of accessibility in public transportation.  Over the course of three weeks, my client and I traveled around the city and surrounding suburbs meeting up with people who had various forms of disabilities and talking to them about the challenges they face while trying to navigate their way throughout the Chicago land area.  I found myself swapping war stories about doctors and therapists, about staying at the old Rehabilitation Institute of Chicago, about showing up to a major redline stop because I forgot that it doesn’t have an elevator and now I need help carrying my kid and his chair up two flights of stairs.  Together we laughed about really stupid signs that instruct people with disabilities to travel a block and a half farther to reach their train, and we moaned about how heading to the corner of North/Damen/Milwaukee, the heart of the constantly booming Bucktown neighborhood is practically impossible if you are using a wheelchair for your mobility.  (You can see my blog about the report and access the report if you click here.)

Heading into one of our portrait sessions, my client mentioned that she was having a hard time getting a read on one particular person.  His emails were short, he seemed really busy, and she couldn’t wrap her head around his narrative for the upcoming report.  Standing in Access Living waiting for him to arrive, I looked around and realized that I had stumbled across a huge resource for my family.  A place I had never heard of or seen before I know is going to play a large part in my life, and I grabbed all kinds of cards and pamphlets to shove in my camera bag.

Adam came downstairs in a power chair and shook our hands loosely without much feeling in his fingers. He was the only portrait I’d done where the condition was unknown.  Every time I see someone who walks a bit differently, using assisted devices to get around, I have to hold myself back from pouncing on strangers and asking them about their own medical conditions. I’ve been told it’s not nice to walk up to someone and just ask them out of the blue why they are the way they are. So I very carefully and cautiously asked Adam what put him in his wheelchair and he began, “I was born with this rare condition called Arthrogy…” he didn’t get any further because I was squealing with excitement.  “That’s the same condition my son has” and we watched his face light up like a kid on Christmas morning.  We were now connected for life.  I mean what are the odds, right?  They are 1 in 10,000 for the non-genetic form of Arthrogryposis Multiplex Congenita, that’s a piece of information I do know.

In early December Craig and I went to the luncheon where the Metropolitan Planning Council unveiled their report, served sandwiches in the Union League, and had a panel discussion about public transportation and what needs to be done to make it accessible, not just for the disabled community but for the aging community as well.  We found ourselves surrounded by the people I had photographed for the report and went over to say hello to each of them, thanking them for their time.  Suddenly the word, “disabled” started pouring easily out of my mouth.  It had been used all afternoon, and the most wonderful people from this community, Aleck’s community, who were made of all shapes and sizes, all different levels of functioning, all different levels of career development, surrounded me.  And when we were introduced to other members of the community it came with the phrase, “they have a disabled son.” You could hear the click of the key in the door, opening us up to this community.  Once that door is open, so are the resources, so are the opportunities, and we will find the people that will help us navigate this long road ahead.

Aleck may seem like the rest of his peers, and he’ll do a good job of trying to make you forget that there is any part of him that doesn’t function like a typical second grader, but the truth is that he is different and hard work will only get us so far. Yes we got him on his feet, yes he’s learning how to navigate stairs, but his body doesn’t work like a typical body, his hands and arms are far from harmonious, and he doesn’t have the stamina to write in his journal for twenty minutes every day.  After all, his hands are the size of a toddler’s; he can’t wear gloves because they don’t make them small enough for him.  His wrists don’t twist, his arms don’t go over his head, his legs don’t bend more than 90 degrees and that’s a big stretch for him.  We’ve made a ton of progress in his eight years on earth, we’ve spent hours trying to get him to learn to put a t-shirt on all by himself, but chances are that may not be a part of his skill set.  When it’s time to set him up for independent living there might still be a lot of daily living tasks he can’t do on his own and that’s OK. We are fortunate to live in a large metropolitan city filled with resources and it’s time to connect deeper with our disabled community so we can be prepared to tackle new issues when they arise and set Aleck up for the best quality of life possible.