Chapter 5: John Today, Advocating with John, Reflections and Inspirations
07:48:44:20 - 07:50:45:25
Lisa: I hear that you spend a lot of time these days with a wonderful young self-advocate named John Angelo. I wondered if you could tell me a little bit about you and John came to start advocating together.
Joe: The - the nursing department at IUP [Indiana University of Pennsylvania] had what was a called a nursing seminar and, shortly after John was born, somebody found out that he was my son and that I knew something about Down syndrome, so I should talk to the nurses about Down syndrome. Needless to say I was a novice, but I educated myself in a hurry and went in and gave a talk and every year they got better and better and eventually they produced a film about John called Guess What Johnny can Learn, so I would take that film to the student nurses and let them see that film and I did that for several years but then John, of course, kept on growing and he became a teenager and then a young adult and this continued and so finally, one day, I told the lady who was organizing the seminars that I thought it was about time we gave up the videotape and let her hear it from the horse's mouth. So I worked together with John and put together about a ten-minute presentation for him to give to the nurses and then I would follow it up, and that eventually evolved into now a half hour presentation with about a 45 minute to an hour follow up by me. We'd done training and we've just changed heads left and right. We were talking about stereotyping early. In those meetings every time we go, it doesn't matter who we're talking to. It can be parents, it can be transition coordinators, and it can be people who provide services, wherever we are, employment people... John blows the stereotypes out of the water. They change their minds immediately upon watching John. He's just an amazing guy. Also the best golf partner I've ever had.
07:50:49:05 - 07:53:26:25
Lisa: I wanted to ask you a little bit about John's life today. Um, where he's working, where he's living...
Joe: He works part time at Gatti's pharmacy in Indiana County. He has an assortment of duties in a general merchandise pharmacy store. They have a gift shop and a cafe and then a pharmacy, and he does maintenance work there. They would just call him the store assistant. He works four days a week, about a half day each. Cut his hours back significantly back in 2008 whenever the crash came, and he never really replaced those hours, but John's so busy he doesn't really need any more hours. Loves his work. The people who work there love him too. He has so many avocations too. It's the, he enjoys, he loves sports and I mentioned golf a little earlier. He loves to play golf. He played... he was a special Olympic champion at [alternate] shot golfing with me as partner. And we beat a golf pro and his daughter for the gold medal, Special Olympics gold medal. The happiest golf day of my life! I really enjoyed that day. But he tries... he waterskies, not waterski, he kneeboards. He - and as far as being an advocate he loves to talk. He's a really good public speaker and he's kind of a ham so he really enjoys it, but he loves to talk. He's - he walks away from his notes and gestures and ad libs and surprises me every time we speak. Sometimes at the end of his talk he talks about his future, and I never know what's going to come out of his mouth. When I mentioned about his being a good golf partner he really is. He never gets angry, never throws a club. If he gets a bad shot it's okay. He'll wait for the good one to come. He's active in church, sings in the choir. He belonged to the Kiwanis, belongs to the Knights of Columbus, and he's not just a token member. He does... participate in their meetings. He does their advocacy work and their community service work. He continues to love to read, continues to love music. Just a regular guy.
07:53:39:10 - 07:54:50:25
Lisa: You're describing [John's] rich life in the community. Is John still connected with his siblings?
Joe: Yes, very much so. Two of his siblings have suggested that when we're not around anymore they would love to have John. I think he wants to do that. So he remains connected of course with those two in particular, but he's close to all of his brothers and sisters. They have him for weekends or take him with them on a trip or he's always doing something with his... and his 22 nieces and nephews almost to a person will tell you he's their favorite uncle. He's generous with them. Every birthday he gives them a nice present. Well he works, you know? He can afford it - and they just love to be around him. He plays games with them. I mentioned his athleticism. He's golfed with every one of them. He golfs but other things too. Just lots... whiffle balls, games in the backyard, and stuff like that; stays close.
07:54:52:10 - 07:56:06:15
Lisa: Joe I'm wondering, I don't know if there is an easy answer to this question but I think of all the work that ARC, that you through ARC, many people have done to close institutions and yet institutions are still present in Pennsylvania. I believe we have five institutions still open in Pennsylvania. Why are they still open today?
Joe: You would ask me that question? I have no idea! There's no need for them. They need to get rid of them. They're a horrible model, they're extremely expensive, they're depriving people of a much better life, and I know there's some parents who want, as I said earlier, want their children there because they feel they're safer but a lot of those people there now their parents are probably no longer alive. I don't know why. I think it's a political thing. There are thousands of people employed at those places and it would be a political bombshell to automatically, all of a sudden lose their jobs. I don't know why. I have no idea why. It's a model that's had its time and it didn't work so let's get rid of it. A lot of states in the United States have no institutions and we should be one of them.
07:56:11:05 - 08:00:21:05
Lisa: I know that some fairly recent regulations, the 6400 regulations for community homes have sort of changed what the standards for community homes could be and I wonder if you were or other folks connected with the ARC worry that group homes will become more institution-like?
Joe: I think ,in a way, they already have. For example, many people living in group homes have many fewer choices to make about what they want to do. They may want to go to church on Sunday but the rest of the group is going to a baseball game, so they go to a baseball game or it could've been the other way around. I think there's a lack of choice. Many times the wants and likes and dislikes of people who live there are not addressed in a fair way. So in that way they have some qualities about them that are institutional, but they are in a neighborhood. They have a neighborhood life. Most of the time they are reasonably close to their own family so they have better contact with their family so they're better than the institutions, but you're right. There are some changes that need to be made. I served for years on a group home that was interested in bringing what's called a L'Arche home into the Diocese of Greensburg. It's - it's not a Catholic group but the Diocese of Greenburg seem like they would be interested in having us start one up there. This is a group home concept where the people who live there make their own decisions. I visited a few of them. I was very inspired by my visits to those places and fortunately the group that I was with is kind of gone defunct. When we found out how much money it was going to cost to bring in a group home we decided we better start looking for resources rather than just continue to meet. When we find the resources we'll start up again, but that concept of making the group home more like a family is what the L'Arche home was all about. I think we need to do that or maybe we can find some other model even different from group homes that does that; that gives people better lives but you have to be careful. You know, there's a push for family living for people and that's good, but I worried about how we would monitor them and that's where IM4Q comes in. If we visit these people who are in family living situations enough times, at least once a year I would say, to make sure that they're safe, to make sure that they're happy, and then let them have a family life. If they're happy and they're safe, why mess it up? Fewer regulations maybe, except to make sure of the safety issues and health and the lack of abuse. So IM4Q, that's what it's designed to do and instead of cutting it back as it seems to have happened lately I think we need to increase it so that we can have different models of life, and still make sure that they work. You know, when you go to a group home to monitor and you're monitoring six or seven people at one time. You go to a family and you only monitor one. John gets monitored so, because he does receive the services of supports coordinator and occasional job coaches, so he gets monitored. I should tell you this. At this talk we gave at the end he was telling the people how he was monitored and he said, "I like to have either mom or dad or both we me at the beginning in case I get asked a question that I don't understand. They know how to make things clear to me." He said, "But we always have enough private time with them not in the room so I can complain if I have a complaint." And he says, "I've been with them forty-one years and so far, so good," he says, "but you never know".
08:00:24:05 - 08:02:30:25
Lisa: Joe when you look back on your career what do you feel has been your greatest um accomplishment or contribution?
Joe: I have no really major accomplishment that I hang my hat on because I never did any of those things by myself. I couldn't have done... none of those things would have happened without a whole bunch of people cooperating with each other and going after it in so many different ways. Without the support I had from the other advocates, without the support I had at home from my lovely wife Shirley to freeing me up to be away from home so much and to tell the kids "don't worry about daddy, he loves you". He'll be home Saturday, or whatever. Without those kinds of supports I couldn't have done any of it so I don't claim credit for any of it or claim any of it as being my accomplishments. They're not mine, they're accomplishments of the whole group and of the people we serve. They're the ones that, you know, I had a meeting one time with representative Ron Cowell who was the Chair of the State Education Committee and I didn't, I just, I said I had a meeting and I didn't mean it that way. I met him one day, and I wanted to talk to him about transition at the time and I said, "Representative Cowell my name is Joe Angelo" and I no sooner said that and he said "You're John's dad?" and yeah John had already talked to him about transition, believe it or not. It was a part of Temple University's C2P2 program. What an amazing thing. He knew who I was because he knew John. So we had our talk and it was very congenial. Many times the people we advocate for pave the way for us by the things that they do, and that was just one example for John.
08:02:33:10 - 08:05:00:10
Lisa: Joe, I'm wondering who or what has been in the greatest inspiration in your life or work?
Joe: Oh that's really hard. It's... I would start with Shirley. It would go to the rest of my family. It would go to all of those ARC leaders who went before me and even those that I never got to knew but knew what they did.Especially those who mentored me. People like Marsha, Teddie Leiden with those wonderful letters she wrote. People like that; they were all inspirations to me. I get inspired too, sometimes, through my faith. I believe my faith has inspired me in many, many ways. I remember not too many years ago, a couple years ago, I received something called a Humanitarian Award. I'm still trying to figure out what a humanitarian award is. From the Dioceses that I lived in, the Diocese of Greenburg and I was going up the steps and I was saying you know what I don't know why I'm getting this, I don't know what it's about, I didn't know what a humanitarian is. I'm a singer in my church, I cantor, and that particular day the song I was cantering, the first few words were "Here I am Lord, I come to do your will." And I really do believe that over the years that's really kind of what I've been about. When these opportunities to serve have been put in front of me I just think that maybe that's what I'm supposed to do. I'm being asked to do this, and so I try. Shirley and I both feel the same way. Yeah, we've managed some pretty exemplary things but it's always been because they were things we thought we should do; that we were called to do. So you know if you want my biggest inspiration, it's my faith.
08:05:03:10 - 08:06:38:25
Lisa: Joe, I wonder for young parents today, parents who by themselves in the position that you and Shirley found yourselves in - is it forty-one years ago? - with a beautiful child with a disability. What words of wisdom would you pass on to them if you could?
Joe: You wouldn't believe how many times I've had to do that; that very thing and it's gotten easier over the years, as John got older, because when we do pass those words of wisdom on we have John at our side and he- he helps people to listen. He helps people to see what's possible, and all we tell them primarily is listen to your child. Don't deny him to try anything from... don't keep him from trying anything he wants to try, she wants to try. Don't be discouraged if your child isn't as abled as you think John is, because some of them are not, but they still have gifts so make it your job in life to discover those gifts and you'll be amazed. They will be beautiful gifts, and whenever they are developed you'll have taken a part in it if you allow them to happen. That's really what we're supposed to do, even with all of our children. Look at them, try to determine what their gifts are, some of them will be hidden for years and years and years and then you'll discover them all at once but when you discover the gifts be grateful for them and encourage them. That's the advice I would give.
More Interview Chapters
- John's Birth, Reaction of Family and Friends
- Education for John
- Employment for John, Joe's Advocacy with ARC, Visits to Institutions
- YOU ARE HERE: John Today, Advocating with John, Reflections and Inspirations
About Joe Angelo
Born: 1935, Pittsburgh, PA
Prof. Emeritus, Mathematics at Indiana University of Pennsylvania & Advocate for People with Developmental Disabilities. Former Titles/Affiliations: The Arc Board of Directors, President, The ARC of Pennsylvania, President, The Arc of Indiana County
ARC, Down syndrome, Education/Right to Education, Employment, Faith, Families, Institutions, Nursing Homes, Parents