VOICES OF OUR REGION
John Tague Jr.
Transcript
My name is John Lawrence Tague, Jr. I was born in Erie, Pennsylvania, in 1947; a day that will live in infamy, I guess. My dad is from the Clairton area. He was born there. My mother was born in a place called Call Grove, Ohio. She was a nurse. My dad worked for the federal government for essentially his whole career. He was in the military and then he went to work for the Veterans Administration in Erie.
And I always had my disability really in the beginning. My parents just thought well I just had stiff legs. I have muscular dystrophy it’s a progressive type disease so things have changed in my life over that period of time. We talked a little bit before about how people that acquire disabilities and people that grow up with them, it's the dynamics are a lot different. don’t feel bad that I have a disability. It’s actually an empowering thing.
That’s interesting to me is that. When I used to go out to clubs when I was younger, I used to cover up the fact that I had a disability. I was walking then. Now, what was funny is, people knew I had a disability because my gait, my walk, walking was pronounced. You could tell. But I thought I could cover it up. So I would go into clubs and I remember one time I was at a club and this guy that I had met and became friendly with. There was a person behind us one night sitting in a wheelchair. He said to me, ‘What is he doing here?’ And I thought to myself, ‘Well, I have a disability. It’s not pronounced.’ And I did say that, ‘Well he has the same right everybody else has to be here.’ then when it became more pronounced and I started using a power wheelchair, obviously I couldn’t hide the fact that I had a disability.
About 10 years ago things started to change. And to the point now that I exclusively use a wheelchair , that I’m no longer able to walk. And those are decisions that you make because again, one of the concerns that I had, was falling and hurting myself. There are a lot of people with disabilities that have secondary disabilities. We were talking earlier about the psychological component of having a physical disability because it does play on your mind and it can affect you. It’s one of the reasons why I’m such a big fan of collaboration with physical disability, mental health, disabilities…It’s important that we work together on those things.
Interviewers: Did you always think that you were growing up that you were going to get married- get a job, and have kids and…Was that your plan?
John: Yes even though I knew I had the disability my desires were no different than really anybody else, go to college, which I did. And I went to Edinboro University now
Interviewers: Who has been the biggest influence in your life?
John: Well I think, you know, a lot of folks…M y dad. I think that I’ve grown to have a lot of respect for him, because he’s done a pretty good job of managing his life. He’s one person that he tells you something, you can take it to the bank as being true. Now within the disability community, like I said, really my involvement only goes back about 10 years, but probably a good friend of mine, a fellow by the name of David Engell…who was one of my mentors. And we started talking about disability issues a couple years before I even got active. Kind of understanding about disability issues and Dave was very knowledgeable so I learned a lot about the basic stuff going in. So I would say Dave Engell probably had as much influence in my view of disability. And then there’s a number of other people. Bill Christopher from Three Rivers Center for Independent Living. And Al Condalucci here from UCP. And another person I’d also be remiss in not mentioning is Jeff Parker who works here at UCP.
Jeff and I have worked a lot on transportation issues. And then a woman who used to work for Three Rivers who now works for the Statewide Independent Living Council, Amy Seltors, who was also one of my mentors and one of things I remember about my earlier experiences was her enthusiasm for advocacy, and how important advocacy was.
Probably one of my proudest accomplishments is to been appointed by the governor as chair of his advisory committee on disability issues. I guess the question you have to ask yourself, do you think your work has improved the quality of life for others with disabilities? And I think in some extent it has. One of the things I also think is important is that we broaden our view of things that we with disabilities try to get involved in other things. Not just disability organizations. One of the reasons why I joined the Allegheny County Transit Council and became president of the council, because it was an advisory committee to the Port Authority but it wasn’t specifically about disability.
Interviewers: What made you become active?
John: It took me until I was 50 to determine exactly what I wanted to do. But everything I had done up until that point was a learning experience. And so it has helped me to be a better leader in the disability community. It wasn’t anything specific other than a wake up call. It dawned on me, maybe I should get involved in this. And it made perfect sense. And a lot of it had to do with conversations with Dave Engel about his involvement in the disability community, about why it was important. Because Dave encouraged me to get involved.But this is…I just found myself. I think that’s the best way to phrase it. I found myself.
My emotional state was ready to accept the fact that I was going to have to start to use a wheelchair and accept the fact that I have a disability and that it’s going to need some support. But my disability has been so slow and so progressive over, you know it’s just, maybe that’s part of it, too. I’ve been able to grow into it.
Interviewers: when the time came when you had to hire a personal care assistant, or an attendant as I guess we say in Pennsylvania. How was that?
John: We had a woman who used to work for us. She started out with the kids. So she just progressed into what she was doing with the child care and stuff like that, and…So I had an easy transition. I had someone who I trusted, who came into the house, and was part of the family. So that made it a lot easier.
But when I tried to hire people I experienced a lot of things that other people do in finding someone. And so I’ve been fortunate, you know, but I also realize what a lot of other people go through, if they don’t have these type of relationships. That’s why I think it was important when they made sure that brothers and sisters could become attendants. And now they’re working on whether spouses should become attendants.
But I, you know, grown to rely on attendant services. Now the danger here is, do I rely too much? Could I do more for myself? Or am I relying on them to do simple things? One of the things you want to do is to try to keep as active as possible and make your own decisions. And if you have to tug on something but it’s a little harder for you to do it, do it anyways. Empowerment is not turning over everything to your attendant. I mean I still make the cognitive decisions about things. But there are physical things I can do by myself.
Really the training that attendants get, the best training is by the consumer. The whole dynamics of working with an attendant are interesting from my standpoint, because a lot of people with disabilities are…They’re not used to being employers. I think if there’s any training that ought to be done is training people how to manage an employee. Because it’s not all that easy.
Interviewers: Do you have any words of wisdom you would like to pass along or something that you really want to see in this cd?
John: What’s important is that we get a broad base of stories. One of the things that I’m obviously big fan of is things that are cross disability. When we talk about issues like housing. Housing affects everybody with a disability. So one of the frustrations I have getting people active and getting youth active. Plus we really have not gotten the African American community with disabilities engaged. We need to get the youth. And again, we’re not different than a lot other movements of getting, you know, folks involved. And we need to do a better job of getting folks to understand that we’re in this together.