[Transcript of, "Parenting Without Pity", produced by Rooted in Rights] [NARRATOR]: Rooted in Rights presents Parenting Without Pity. Parenting Without Pity is a storytelling project where disabled parents draw from our own experience of disability to help nondisabled parents be better allies for their disabled children. [AUDIO DESCRIPTION]: Carrie. Seattle, Washington. A picture of Carrie with her husband and daughter. CARRIE: If I would have had parents that really bought into, or were aware of, or fighting for champion disability rights, I think I would have dealt better with things like bullying and feeling socially excluded in schools. It would have taken me last time to realize that I could be a mom, or a parent, or be married. I didn't feel like my parents were open to any of that, so I sort of just got the message that I was supposed to be an academic machine, but there wasn't anything... I was not gonna have a life anywhere close to theirs. Now that I know what I do about disability and can see disability as a source of community and positive identity, and not be sucked into that idea of being fixed or overcoming, I can have a hard time dealing with the grief experiences of nondisabled parents of kids with disabilities, and they may be in some of the same places that my parents were in terms of viewing disability, and that can mean that they're uncomfortable with disability and therefore I feel like they're uncomfortable with me. [AUDIO DESCRIPTION]: Christa. Toronto, Canada. A picture of Christa and her infant. CHRISTA: So when I lost my leg when I was 13, I already...I had bone cancer, and the surgery was at that point the cure for my cancer, I'd already had chemotherapy and radiotherapy and so I'd already been in the hospital for about two years, in and out for treatment, and so when it came time that the resolution was going to be amputation, it was kind of normalized for me in a bit, in that I had made a number of friends who had also lost limbs, just other cancer kids. I also had met a number of kids who had died, I knew that the fact that there was this option for me was lucky. I think at that age the idea of disability community, I had no idea. [laughs] I think that's only even recent years that I've actually really started to feel aware of and part of the disability community, and I think that's just my own... There's a lot of different communities, I'm an indigenous person, and I'm queer, I think my 20s were more politically about being active in those communities, and then in my 30s it was more like, "Hey what about disability? What are my politics about this?" I was really lucky my mom... she's a psychologist and her specialty was working with adults with brain injury, so different, very different experiences, but she already was in a world where she was looking at adapting all the time, and accessibility, what she could have added to that was actually giving me some space to also breathe because I think with all of that sort of positivity and support, which I think is really great, I think I actually missed out a bit on having a chance to say, "This kind of sucks." [AUDIO DESCRIPTION]: Heather. Boston, Massachusetts. A picture of Heather with her daughter. HEATHER: If I'm talking about disability in terms of being a black disabled woman I know automatically that a lot of us have a harder time self-identifying as being disabled because in our minds that is just so layered because of family, maybe stigma, culture, religion, those are just some of the things that might impact coming out and saying we actually have a disability. My parents weren't really connected to any sort of support groups, or just other disabled parents and kids. That came much later, and I think for me that would have been really something that would have been so beneficial in many ways in terms of self-awareness, and sort of providing a mirror to see other people among other folks like myself, of color, who are black and disabled. [AUDIO DESCRIPTION]: Julie. Fayetteville, Arkansas. A picture of Julie with her husband and two sons. JULIE: I think people are too quick to put a label on kids. My husband says if they did that back in his time, they probably would've labeled him. They just do it so quick because I feel like it's easier to put a label on kids than to be patient and help the kid. [AUDIO DESCRIPTION]: Sheila. Bremerton, Washington. A picture of Sheila with her two sons and husband. SHEILA: We have to have conversations we're not having. As parents, regardless of whether we have disabilities, we have to change that culture for our kids. There is still this gigantic culture of shame and embarrassment around disability. We need to make that go away. we need to make it that this is who we are, this is okay, how we function is okay, that your wrist is bent and you can't get anything into it or out of it is okay, that's fine, there's no shame in that, that's just who you are. [AUDIO DESCRIPTION]: Debra. Seattle, Washington. A picture of Debra with her son and daughter. She signs to camera while a person beside her translates. DEBRA: Hmm. My parents later in life admitted that they wished they had learned sign much sooner. Now of course I could speak somewhat and lip-read to some extent, but now with the vision loss that I have, and not having seen my family that often, when I do visit it's much more difficult for me to lip-read my brothers, for example. My mother has since passed away but my father and my older brothers have often said they feel like they wish they had learned sign so that we could have all participated equally in the family interactions. Mind you, me and my brothers who were deaf-blind, when we all learned sign, we were able to communicate with each other so we had a lot of interaction but I find that a lot of deaf-blind friends who have siblings that are all sighted and hearing and don't learn sign, those deaf-blind individuals feel very isolated in their families. And now I meet parents who have deaf-blind children, and they ask me what is the biggest challenge and what should they do, and I encourage them to find a way to communicate with their family. [AUDIO DESCRIPTION]: Steven. Bristol, Pennsylvania. A picture of Steven with his infant and wife. STEVEN: I think from the day I became deaf, every day after that was better than any day before. My life has only gotten better, except that I lost all of my friends and family. Yeah so I still go see that I go visit my mother, go visit my father, and we sit there and we read or they might write me a little note, but there's no real communication happening. Well what I would love parents to know is first of all, is you need to talk about it, is you can't be afraid to name it. That goes with any disability is, I think right in the beginning it's easy to try and resist it, to deny its existence, to attribute it to something else, The most important thing for parents to truly understand disability is to have continuous positive exposure to disabled people. I think projects like this... the constant exposure to disability in meaningful ways can go a long way. [AUDIO DESCRIPTION]: Keith. Fontana, California. A photo of Keith. KEITH: It's okay to mourn the loss of the imaginary child because of all those times you built up that child, you had all these visions, these dreams. Understand that feeling, but celebrate the child that you have, and all their beauty and all their complexity, because you're not raising autism you're not raising cerebral palsy, you're not raising low vision, you're not raising mental health. You're raising Jamal, you're raising John, you're raising Karen, you're raising Susan, you're raising Rahim, and once you get to that part then everything else just becomes mechanical. My mother didn't raise a disability. She was raising a black man in America who was born at the end of the '60s and the '70s, who just so happens to be America's worst nightmare because he's a black man, you know, dadadadada. So I tell all parents, but particularly black parents, Is that the data is stuck. Seven out of ten individuals who have violent incidences with the police who end up dead or seriously injured are people of color with disabilities. When people of color are who is the largest kid, if your kid has a hidden disability and has an emotional outburst, suspensions, self-segregation or substantial segregation, there are real-world consequences to you not giving your kid the tools to understand where they are in America. [NARRATOR]: To learn more and to share your story visit RootedinRights.org/Parents [End of transcript]