Ian Minicuci was diagnosed with Spina Bifida, a condition where the spine does not form properly, at birth.
At the age of 11, Ian was tired of the relentless treatments and surgeries (he had 36 up to this point) and decided to opt for a wheelchair instead.
Thirty years of wheelchair use later, Ian not only has an inspiring and refreshing outlook on life, he has also been in a major Hollywood film.
I chatted with Ian the other day about living and thriving with a disability. Here is a bit of what he had to say.
At what point did you realize you were different from other kids?
As early as I can remember. I saw Gina [Ian’s twin sister] doing things I couldn’t do. I saw my friends doing things I couldn’t do. I spent a boatload of time in the hospital.
It is especially interesting for you because you are a twin. You could see someone your exact same age who you could doing things that you couldn’t.
I think it is different for everybody, but I was blessed with parents who taught me there is a difference between having a situation I was affected by rather, than having a situation I was afflicted with.
There are things I need to do ahead of time to ensure I can do them. For example, if you call me tomorrow and say we are going to Joe’s. I will ask if I can get into Joe’s. If you say yes, but there is a washroom upstairs. Well, then I am not going to Joe’s. There are just things I need to do to plan ahead.
Is this something that feels like a pain in the ass to you or is this just life?
It is a little bit of both. It is not really a pain in the ass because I have been doing it for 30 years. It is different because most of my friends forget, and I am glad they forget. I am glad they look at me normally, but I can’t forget.
What did your parents do to help you understand the difference between being affected and being afflicted by something?
I do not have specific examples, but they allowed me to live my life, to go through the trials and tribulations all children go through and learn things on my own. My parents treated me and Gina the same. If they gave her an opportunity to do something, they had to give it to me. They did not have to, but they realized if they didn’t it would further alienate me and make me think that maybe I could not do things; that maybe there was something wrong with me.
Being a person in a chair has afforded me opportunities in this life that had I not been in a chair, I would have never had.
First and foremost, acting, I was only cast in the movie Cedar Rapids because they were looking for a guy in a chair.
What was your role in Cedar Rapids?
I played a guy by the name of Perry. He was a guy in a chair. I played opposite of John C. Reilly. The studio could cast anyone and put them in a chair, but they wanted it to be as real as it could be. They called Janet Pound, and she called me to ask if I was interested in auditioning. I was not an actor, but I thought, “What the hell?”
Have you been in other films since?
I was in a couple of short films. I wrote a couple of short films. I am cast in another film called Hell that is starting in August with Michael Berryman and Damon Whitaker.
Being a person with disabilities has afforded me these opportunities. I can’t be mad about it. I could be I guess, but why? I could be sad about it, but what is the point.
Could you talk about your evolution from walking up until the age of 11, and then your decision to be in a chair?
By the age of 11 I had had 36 procedures.
They did another procedure to my leg. They put me in a walking cast, and then I went on vacation. I re-broke the leg while on vacation, but didn’t know it because I couldn’t feel it.
When I went back, they said they had to re-do the surgery.
I wasn’t broken. They weren’t going to fix me.
I was going into 7th grade. I had the proverbial reputation to protect. I wasn’t going to be a guinea pig anymore. They told me that was fine, but I would have to be in a chair.
It was the best decision I have ever made. I would do it again tomorrow. I look at it that way because I have friends that are in a chair that did not have the choice because of a car accident or because they got shot, fell out of a tree, what have you.
I made that choice, consciously. I still have the ability to walk. I can walk around the house. I can’t walk around the mall.
That is a pretty enlightened decision for an 11 year old to make.
I had already been through so much already. At that point, I was so sick of everything. I was done. I was 11 years old. I wanted to be a kid.
I think being a 7th grader is the worst torture of humanity. How was it to be a 7th grader and in a chair?
I was fine. I was treated wonderfully. I have great friends. I think it goes back to growing up the way I did. My parents raising me to believe that my situation was something that affects me but doesn’t afflict me. Having that mentality allowed me to interact with people, and it sounds weird to say it, but to make them comfortable around me.
Is there anything you would change in this whole process?
I want to be taller. [Laughing]
It is hard to say. Looking at it now as a 41 year old male, I probably would have done things a little differently in the sense of physical therapy, caring more, doing more things, realizing now that they were there to help me rather than hurt me. I was a jerk as a kid.
I think everyone was a jerk as a kid. What about advice for the 7th grader today that has Spina Bifida?
My only advice would be to just live and do your thing. Be you. People are going to think whatever they are going to think no matter what – you can’t control it. Knowing that – be you. Do what you have to do to be happy. In the long run, you have to please yourself before you can please anybody else. That is just my philosophy.
There is an awesome Bill Cosby quote that is, “Decide that you want it more than you are afraid of it.” And to me that means whatever you want to do – go get it. Go be it.
What do you do for work?
I am a jack of all trades and master of none kind of guy. By trade, I am a product specialist in the auto industry. I do auto show tours for General Motors. I am one of the guys that sit at the auto shows, and when people have questions I answer them.
I am an actor.
I do speaking engagements with kids and adults. I do the whole consulting thing with businesses that want to be more accessible to people with disabilities.
I have worked with people in chairs. We were buddies, but I never asked why they were in a wheelchair. When is it ok to ask?
I think it depends on the relationship you have with that individual. I have friends who have still, to this day, never asked me. I don’t know if it is because they don’t care, or if they are afraid to ask. I am not going to broach the subject. I know why I am in a chair. If they want to ask, they will.
If I was at a party, and we met and were chatting, would it be appropriate to ask you why you were in a chair?
Sure. Yes. To me it is.
Do you think that is generally the sentiment? If you took 100 people who were in a chair, do you think 90% of them would say the same thing – “Yes, definitely ask.” or is it annoying to always be “the person in the chair”.
I think the majority of people would say that it is ok to ask. I think, as you just said, “Why do I have to be the person in the chair?” Well, because you are, and so you have to learn to embrace it.
I am 41; as I said earlier, when I was a kid I was a jerk. There were times when, for whatever reason, I had this chip on my shoulder. Everybody owed me everything, and then I figured it out that this is what I had to deal with, and I was either going to be a bitter old man, or I was going to live with it and grow up, and I chose the latter.
To answer your question, “Why do I have to be this?” Because you are.
How should parents handle it when kids blurt something out in front of a disabled person? What do you recommend they do in these situations?
Let the kid ask. I was in store once, and I was trying to reach something. I was balancing, and one of my wheels was off the ground. It started to spin. A little boy saw it and was mesmerized by it. The mother was freaking out, grabbing the kid, telling the kid not to stare.
It is better to ask and have an answer than to walk away without an answer and teach your child to look the other way.
What do you do for fun?
In the middle of winter? Not a lot. I like being with friends and family. Going to see live music. I am a big baseball fan. I enjoy going to games. Just hanging out.
What about living independently?
I live here [with my family] because it is easy, and the house is set up for me. But, I have been on the road for the last 13 years for an average of 150 to 170 days per year. It is just a matter of setting things up the way you wanted them set up.
Did you ever find a time where it was hard to find friends?
Do you think, again, if we interviewed 100 people in a chair, they would say the same thing about the ease of making friends?
I don’t know. The folks I hang out with in chairs, if I hang out with them at all, we are all pretty out going people. We do our own things. It is easy for us.
What is hard for you?
Sleep as of late. [Laughing]
Not a lot. Snow removal. [Laughing]
I don’t know.
I can pretty much do anything, I just have to go about doing them a different way. What is hard for you might not be the easiest for me, but I will get it done. You just have to do things a different way and the quicker you learn that, the better off you will be in the long run. It goes back to my parents making me do things.
You have some amazing parents.
I do. I really do. I am beyond fortunate in that regard.
What are your strengths? What are you especially good at?
I hope it is my job. I hope it is educating people.
Did you ever find school particularly hard for you? Any more or less so than it was for anybody else did?
I don’t think so.
You took classes with everyone else?
What about dating?
You are talking to a guy who has been single for the last 15 years. I don’t even think about it.
Is it possible? Sure.
Do you feel you are frequently excluded from things?
No, I don’t. But, if I am, I guess I wouldn’t know. I don’t think I am.
A long while back there was an evolution from the word handicapped to disabled? Can you talk about that?
I prefer person first language. I am a person who uses a wheelchair. I am a person with a disability. I am a person first, disability second. In my mind, the more I say that to people, the more they realize it. Disability is not me. I just happen to be in a chair.
What will it take for that evolution to happen? For a mother to applaud a child’s curiosity in you? What does society need to do before those emotional barriers are gone?
Education. People like you doing stories like you are doing. It is huge. It gives us the minority, if you will, the opportunity to express what we need to express. To have that parent understand that it is ok to for your child to ask that question. Without them, your child will never know and that runs the risk of them never communicating with a person with a disability.
What about people with disabilities, what do they need to do to help form that bridge?
Be outgoing. Be ubiquitous. Be everywhere. We have to recognize that there is someone out there with a child that is not comfortable and [we need to] give them that smile, that nod that says it is ok, that says I am fine.
I used to have real issues with people offering me assistance. I didn’t want that. I didn’t need it. But, it is ok to tell them in a nice way that, “I got it.” But, when I am here in Michigan, when it is 13 degrees out, and I am stuck in the snow, and you see me, please offer to help me. I will tell you the best way to help me.
Have there been scary moments where you were unable to help yourself?
I don’t know if scary is the right word, but after I get in the car; I flip the chair up and put it inside. There have been times where the chair rolls away, and now I am in my car, and I can’t drive to it because the keys are in the chair. That has happened more times in the last couple of months than I care to admit. It is not scary. It is frustrating. Waiting for someone to see you and help you.
Are there misconceptions about people in a chair or with disabilities that you feel need to be eliminated?
I am sure there are in the dating world.
The one thing that bugs the crap out of me is when people say I am “wheelchair bound” or confined to [the wheelchair]. I am not confined to anything. I am not in the chair right now. The chair is not me. I use it for mobility. I am in it 12 to 14 hours per day. Once I am home I am not in it.
What are the misconceptions in the dating world?
By that I mean, are they going to be comfortable? Is an able bodied person going to be comfortable with a person in a chair and vice versa? But, I would say it is the same with able bodied population, they ask themselves, “Am I going to be comfortable with my partner or not?”
You talk about being a punk a kid. I think I would argue we were all punk kids, but I am curious what triggered you to change from being angry to being enlightened?
I don’t know if anything happened. I have a couple of friends that I would consider my mentors. Back in the early or mid-90s, they basically called me out on it and basically said, “Hey, what are you doing man? This is who you are. Grow up. Live with it. Quit being a dick.” It was the smack in the face I needed.
Anything else you would like to add?
If you are a parent with a child that has a question – let them ask it. If you are a parent with a child that has a disability, let them be a kid. Let me them make their mistakes.