Kathleen on Disability and Relationship Challenges

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These are very difficult topics to broach, and there’s a part of me that’s like, do you really want to throw that at a 13 year old and crush their spirit with the realization that because they need long term care, they will be very financially limited forever? I sometimes wonder if I was better off and had a happier childhood because I didn’t understand that until I was older. But at the same time, I think it’s important to prepare for these kinds of realities. And I think even within the disability community, we haven’t really had a cohesive conversation about these truths. 

Like, there’s a segment of the disability community that will just be like, yeah, people with disabilities can date and get married just like everybody else, no stigma. And it’s like, well, that’s only true for a certain subset of the disability community. That’s basically true if you can take care of yourself physically. If you can, it’s a whole different can of worms.

So yeah, I think the conversation would have been helpful, certainly, and it still would be, rather than just pretending like, oh, we’re just like everybody else in every way, because we’re not. And if we were the same as everybody else in every way, then we wouldn’t be having this conversation right now about disability stuff.

Harvey on Family

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Text on Video: Harvey on Starting a Family: 

Text on video: Harvey Meets Ethel:

I, you know, met Ethel at a discotech. It was, you know, late summer of ‘79. Okay. Ethel came over there with a girlfriend who left her flat because she did not want this girlfriend, did not want her friends to know, that she is hanging out with somebody who has a disability. But after a while, she meant business.

She said that either I buy an engagement ring, even make that decision to get engaged, or otherwise we split up. When we got engaged, I bought her a ring. Then the following year, we got married.

Well, look, my family wasn’t all that supportive. I think their primary issue was about me not earning enough money.

Well, I guess after being married for quite a while, we started to think about having a family of our own. Now, of course, we had choices. We could have tried to have a biological child, or we could have just decided, or we could have decided to continue not having children, or we could pursue adoption. But that’s what we decided upon.

Text on video: Harvey and Ethel try to adopt a child: 

Either of our families wanted to support us. They felt that we will not be able to handle the responsibilities that come with having a child, because you know how a lot of people feel when you have a disability. They figured, oh, you’re not going to be able to do this, you’re not going to be capable of handling that.

First, we went to a counseling and a referral service. We worked with them, and then they hooked up to an actual adoption agency. Now, we worked with them, and then they assigned a social worker to work together with us. She had to make visits to our home and do a home study.

She had to ask us questions about our backgrounds. And then the adoption agency had difficulty in reaching a decision about us because of our disabilities.

Then around Thanksgiving time of ‘91, that time, a little baby with down syndrome got placed into our home.

We named her Samantha. She’s now 15 years old. Well, she’s playful. She needs a lot of love and attention from me. Yeah. She loves to listen to music. She likes her radio.

Text on video: Harvey and Ethel were married for 23 yrs., 5 

months, and 3 days.

Kathleen on Sex Education

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I do feel that when I was growing up, like middle school, high school, I’m not saying that the sex education programs that we were offered in school were super great for anyone, but they were certainly not inclusive at all of people with disabilities. 

Nothing about people with disabilities was mentioned ever, and I kind of felt like they could have improved on that. Of course, I was the only obviously disabled person in my whole grade, so there was at least the risk of if there were some disability specific portion of the curriculum, that everyone would just turn around and stare at me. 

But still, I do think they should have mentioned something about disabilities in those programs. And I realize now, in retrospect, that during that time, the sex ed programs in the schools were very tightly controlled because it was still during the Bush administration.

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