This is the fourth in a series of profiles designed to share personal accounts of how people with disabilities are doing in the community. In this profile, I talked with John Tschida. John works at Courage Center as the Senior Director of Public Affairs and Research. Born and raised in St. Paul, John currently resides there with his wife and three children.
Access Press: Can you describe your disability?
John Tschida: I have a spinal cord injury: C 5,6. I broke my neck on September 9, 1993. I was riding my bicycle to work. I don’t have a memory of the accident I’m not sure if I hit a bad patch of gravel or if there was a car that bumped me but I went over the handle bars, hit a lamppost, and that was it.
AP: Did you have the same job before and after the accident?
JT: I did. When I broke my neck, I had been working for the House of Representatives for over three years — I edited a session weekly magazine. A few days after my accident, my boss came to visit me in the hospital and said, “Your job is here. We’ll hold it for you, and you can ease back into it whenever you’re able.” Also, the people at the legislature held a silent auction for me and raised $12,000 . We had donations from the Minnesota Twins, other teams, and restaurants. A buddy of mine wrote to the Grateful Dead and got a couple of autographed pictures.
AP: What did they raise all this money for?
JT: Although I had fantastic insurance as a state employee and really didn’t pay any medical out of pocket, we quickly realized that if we were going to stay in our house, we were going to have to do some major remodeling. In hindsight, we probably would have moved if we had to do it all over again. But at the time we loved our neighborhood. We loved the school that the kids were in and wanted to stay in the house. So we added twelve feet onto the back of the house and added an accessible bathroom. We also redid the kitchen. One of my favorite things to do is to cook. I do all the cooking in our house. It’s relaxing, and it’s something the kids and I can enjoy together.
AP: It strikes me that you really haven’t been disabled very long, and yet you are doing so much advocacy work.
JT: After my accident, I got frustrated seeing things at the capitol that weren’t happening to benefit people with disabilities. Instead of just writing about the issues, I wanted to get my hands dirty and make a difference. Growing up in a large Catholic family, guilt was certainly part of my mother’s parenting toolbox, and she always used to tell us to whom much is given, much is expected. I knew the legislative process, I knew a bunch of people who worked in the legislature… if guys like me aren’t going to advocate, who’s going to do it?
AP: How do you like your job at Courage Center?
JT: I love my job. I do the lobbying for Courage at the capitol and also work closely with the Coalition of Citizens with Disabilities to represent the broader disability community. There is also a research component to my job. Courage does a great job of compiling information. Unfortunately, we need to do a better job of using that information to prove to others that our programs are working, in terms of examining outcomes. For example, three years after people go through the residence, are they more likely to have jobs and be living in the community, or are they down with a pressure sore because they’re not taking care of themselves? We know people who go through the residence are doing better. We need to use our data to prove it.
I’ve worked at Courage since July of 1999. It was Courage Center and family that brought us back from Washington D.C., where we were for two years. I had a fellowship to go to Georgetown University to get my master’s in public policy, focusing on health care. I also worked at the National Rehabilitation Hospital Research Center which focuses on health issues for people with disabilities. I was looking at medical assistance and managed care programs. I had a chance to study a couple programs around the country and heard about the AXIS health care project here in Minnesota (owned by Courage and Sister Kenny). That is exactly what I was studying about and they were actually doing it the right way, so I’m also very involved with that.
AP: To what do you attribute your great ability to adjust to life with a disability?
JT: When I talk to somebody outside the disability community and say that I feel lucky after I’ve broken my neck, they don’t get it. But people in the disability community understand. I had a real head start on life by the time I broke my neck. I already had a good job, and was married with two kids. The joke I always use talking to school groups is: “Before I broke my neck, I had a used minivan, a good job, a wife and two kids; today, I’ve got a new minivan, a better job, a wife and three kids.”… I feel very fortunate when I look at the people coming through Courage and see many of them are so young. They’re just starting to think about their future and going through all the dating garbage which is hard enough when you just have acne to worry about, let alone a disability.
AP: It’s unfortunately common for people, when they become disabled, to have their marriages disintegrate. How did you get through that time and how has your marriage changed?
JT: Acquiring a disability doesn’t change your personality — what it does is magnify it — and I think that’s true of relationships as well. My wife and I had a very strong marriage prior to my accident. We are very open and we fight well — we don’t store things up — we deal with problems and move on. Also, we both come from very large and close-knit extended families which means we have a strong support network to compensate for what I can’t do because of my disability.
There’s also a pretty bright line with caregiving in our relationship. Some people can pull it off, but for us combining the husband /wife relationship with the client/caregiver relationship doesn’t work at all. I think that’s what we struggled with the most right after my accident you come out of the hospital after two months of therapy and you hit the real world and it’s sink or swim. Nobody told me how to hire PCAs; they give you the number for MCIL and kick you out the door. That was a real struggle for us. There were a whole lot of tears and therapy sessions a lot of things that needed to be worked through. But the bottom line was we asked the question of each other: “Are you with me in this?”
Disability is a team effort, it doesn’t just affect one person. It has a huge ripple effect, but my wife is a very strong woman and that’s another reason why I’m lucky.
AP: Tell me about your kids.
JT: I have twin boys who are 12, and I have a 3-year-old daughter that we adopted from Vietnam. My kids are great kids. I hear other parents mean mouth their kids in their pre-teen behaviors but we are very fortunate. Our sons are very protective, very doting, very helpful boys — and they love their sister to death.
AP: Do you think your disability has affected your sons’ personalities?
JT: Yes. At school they interact well with kids with disabilities and other kids who may be perceived by others as being outcasts. I think they’re more sensitive, caring, and empathetic. They’ve got an understanding of what other people go through because of what our family has gone through. Part of that is my disability, but part of it is also the work that I do and the work that my wife does — she works at the Center for Victims of Torture.
AP: Was your accident hard for them?
JT: My accident was their first day of kindergarten, so they were five. It wasn’t easy on anyone, but to them I was just Dad, whether I was standing or sitting. My kids like to hang on the back of my wheelchair — my daughter climbs up on my lap all the time. We go roller-blading; Dad throws it into second gear and we fly down the street and hope we don’t hit any cracks in the sidewalk. In many ways, I think my sons accepted my disability long before I did.
AP: They sound very adaptable.
JT: Yes, but it’s not all peaches and cream. I had visions of myself coaching the baseball team and throwing the ball with them in the back yard, etc…. It still hurts not to be able to do that, and there’s a sadness on their part that it’s not Dad out there doing that stuff with them. We talk once in a while about things that we used to do as a family. The summer before I broke my neck we were camping just about every weekend. We did state parks and went off the beaten path, took a lot of trails with the kids on our backs. And now we still go camping but we go with grandma and grandpa, because grandpa can toss me on the inflatable air mattress so I don’t get pressure sores my wife can’t do that herself.
We find accessible trails at Lake Itasca now and do that instead, so it’s different. We still have a great time, but there are certainly “remember when…” moments for them more so than for me.
AP: Did you decide to adopt your third child because of your disability?
JT: Adoption was something we talked about before the disability. My wife had very strong feelings about a daughter, and I had a very strong feelings about no more than three children.
AP: Did you have any trouble adopting?
JT: There is certainly widespread discrimination in other countries against people with disabilities. In fact, not just disabilities; one Korean program has height and weight charts that you need to fit into or they think that you’re unfit to be a parent. We interviewed with a woman from Ecuador, who was very polite and personable, but we got a letter in the mail a few weeks after we spoke with her saying that their government would not be adopting to any “cripples.” A number of countries don’t even pretend to be nice, they just don’t adopt to people with disabilities.
The Vietnam program, on the other hand, was very cooperative and embracing of the disability. We also liked it because they weren’t just interested in placing kids in families; there was a very strong social service component to the program. They really do whatever they can to keep Vietnamese families together so that poverty isn’t the reason to put a child up for adoption. The mother of our daughter was a 35-year-old single woman from a rural community and attitudes toward women there are much like those of the 1940s and 1950s in the United States. Being a single mother is not socially acceptable; it is shameful. She came to the city, had her baby in the hospital, and disappeared. My daughter, Phoenix, was seven months old when she joined our family.
AP: Do you ever feel shunned by society for being a parent with a disability?
JT: I’m always surprised when I catch someone staring at me while I’m wheeling through Target with my daughter on my lap. It surprises me because I so rarely feel different. Which is not to say that I don’t consider myself disabled. I’m just doing my shopping! When I catch someone looking at me goofy — there’s a part of me that gets angry. Fortunately, I do think that’s rare. I get a lot of smiles, and a bit of people overextending themselves wanting to help — I don’t know if they’re just being nice or if they think I can’t handle it. A lot of people are very surprised when I say that I have three kids, including a 3-year-old.
AP: Do you have any closing statements or words of advice you would like to share?
JT: The disability community is very broad and I would not presume to give anybody advice. What I think is that there needs to be an honest and open debate within the disability community about our differences. The community is not monolithic, and our differences are important. There is a huge difference between having an acquired disability, a congenital disability, a developmental disability, or mental illness, and some folks don’t want to talk about this. But I think that it could be healthy and helpful for the advocacy community and for people with disabilities in general to discuss our differences. It could also be very educational for the able-bodied community. It’s always beneath the
surface and it’s something that makes people uncomfortable to talk about, but it will make us stronger. We tend to talk within our circles, but there’s a lot that we can learn from each other and a lot of similarities that we have. And differences are okay it can be helpful to acknowledge them.