Chapter 5: Impact of Disability on Relationships

11:54:59:22 - 11:56:44:09

Lisa: Dr. Edwards, you talked about, sort of, being tired of fighting when Graynle went to Germantown, temporarily. Temporarily tired of fighting, but people don't often talk about the effects of disability, sort of, on familiar relationships on how that constant need for advocacy is exhausting and stressful and I wonder if you felt that in your own marriage and family?

Dr. Edwards: Yeah, the, uh, the heated arguments about what to do about different kinds of situations and um, I think what happens is that, this is something that might require some sort of, uh, psychological inquiries. Often times you may repress, uh a situation and directing your anger at the person that's creating the problem. And you act out that stress on someone else. And I think that's what happened in our marriage, you know. Uh, the, uh, the unable to come to reasonable conclusions about how to deal with certain situations and uh, it just happens too often until you think that the only relief is to just part company and do the best you can for the child. Uh, that's the best explanation that I can come up with. I don't know how accurate it is but that's my prospective.

11:56:44:09 - 11:57:44:06

Lisa: How did Graynle adjust to the fact that his parents had divorced?

Dr. Edwards: I really don't know. I really don't know because while the divorce took place, uh, I never lost contact with Graynle. I mean, I see Graynle four to five times a week. Uh, not just seeing him but taking him home, feeding him, putting him to bed, and what have you. So its, I mean it could be, that your dad's a fireman, for three days you don't see him now, he's back, his three day stint is over, he's back home again, you know. It's not quite that simple but the, uh, he, uh, Graynle has never been away from his parents, never.

11:57:44:06 - 11:58:07:05

Lisa: You know we all have a vision for our life and then our children change that vision in many ways.

Dr. Edwards: Mmm Hmm.

Lisa: Um, certainly, when someone has a child with disability -

Dr. Edwards: Mmm Hmm.

Lisa: -- that vision changes in ways that no one can really anticipate.

Dr. Edwards: Yeah.

11:58:07:05 - 12:02:20:29

Lisa: I guess my question is how do you come to a place of acceptance when you realize the life you envisioned is incredibly different from the life you have?

Dr. Edwards: Well. Uh, I think that I'm fortunate. I'm really fortunate because professionally I've been able to reach some heights I never really thought about when I was in my early 20's, you know. What was important to me was my jump shot and basketball and um, being able to make a decent living. That was it. It wasn't until I was 29 that I decided to pursue, uh, academic credentials. Master's and a Doctorate and uh, I blame that, I shouldn't blame it... that was a result of my interaction with Marcus Foster who was a celebrated educator here in Philadelphia area who went to San Francisco and was murdered by the Symbionese Liberation Army. You know the Patty Heart situation? Well, her group. Um, he insisted that ID's be worn in schools by everybody and there was a faction out there that infiltrated the school with drugs and all kinds of stuff. And uh, the price he had to pay was being murdered. In fact, he was murdered. His colleague, I mean his assistant was shot pretty badly but he survived. But he was the one, I saw in him a person that I would like to emulate. And in fact, he's, I had left teaching because I had decided I was going to be this big shot Economist, okay? And uh, I started graduate school here at Temple. I had taken two courses and I went back to see him during the summer and he said you know we need guys like you back here in education. I saw it too. That's when I went back and decided to start on my graduate studies and uh, so. I don't think, as I said, I think that I was fortunate because when I made a conscious effort about what I really wanted to do, once I think in the dental school, and I had put that on the back burner. I took that off the stove and didn't even think about it anymore. Once I decided what I wanted to do, I started to realize it. And I blame a lot... blame? I credit my sister with most of that because there are times when, instead of me picking up Graynle at four o'clock, four-thirty coming in from Norristown, I would pick up Graynle at 7:30. He had already been fed and all I had to do was get him home, we'd watch a little basketball if a game was on. Put him to bed, get him up in the morning, get him out to, uh, to the workshop. Uh, so uh, yeah, I credit a good bit of that to my sister. She allowed me to pursue my dream and uh, that was... that decision was made forty years ago, yeah.

12:02:20:29 - 12:05:47:24

Lisa: Do you think there's a need to, kind of, um, council and nurture young parents who, um, have a child with a disability and the road ahead is uncertain for them?

Dr. Edwards: You know, it's the service they need is there. Uh, but I can just say to you that from my prospective, uh, I just don't have time because Graynle was still apart of care giving. I mean a big part of it. I do my, I do the things I do, the way that I can be of service is uh, I'm on the state affiliation of the disability rights network. I'm on their board. So that's one way I advocate. Another way I advocate is, uh in my teaching. I make it a point to deal with, uh, special education situations that are germane to whatever topics I'm dealing with, but directly interacting with young parents; there's a need to do that,. What I think is happening though is that a number of young parents have so many services today that we never even thought of having, you see. Uh, you have services that pick up a child from birth today, you see, that didn't occur 40 years ago, 50 years ago; just wasn't there. We find that its not as easy, this has been my experience in terms of just talking with some of my colleagues who've been in the fight a long time. Uh, they have difficultly getting parents to get involved, you see. Uh, but the need is certainly there because things can change. Uh, take the waiting list; the waiting list is something that a number of people are involved in, but for the parents who are receiving these services, a lot of them are not involved at all. And they may have the same reason that I had. Listen, I'm a caregiver in the house, so it's kind of tough to be out there, you know, fighting those kinds of supports, taking on parents. I think the need is there, uh, for certain the need is there for those parents who aren't getting any support because they are the waiting list; I think it's in the neighborhood of 13,000. Okay, yeah so. I'd like to see it happen, just that I'm just not apart of that. Yeah.

12:05:47:24 - 12:08:21:06

Lisa: You had talked about earlier, um when Graynle Junior was very little, three or four; the invitations not coming to parties and all of that. Um, and the feelings of isolation; I think you're right; isolation is the right word to use. Um, has that changed now for Graynle?

Dr. Edwards: Um, in some respects, it has changed, uh, the, he's now involved in a lot of, uh, activities that are, uh, originated by the service agencies. Um, the, and at often times he's interacting with other intellectually disabled citizens. Um, he goes out to the jazz performances on Monday nights periodically with his mother. Uh, he's not there the entire time because I usually pick him up, uh, somewhere in the neighborhood of 6:30-7 o'clock. He attends all kinds of sporting events. Uh, he went out to, he saw, uh, I think it was, uh, it was the St Louis. But he, two weeks ago he was at a basketball game at Temple University. But these are activities that I'm initiating or his mother is initiating or the intellectual disability community are imitating. Uh, he's going to family houses in Washington DC, North Carolina, New York, but again being initiated by parents in that regard. Uh, so there's still a bit of isolation in terms of what you would call the normal population saying Graynle, come on in, be a part of this. That's not happening. No.