Kathie Snow, Benjamin Snow, son of Kathie
mother of Benjamin
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Benjamin has cerebral palsy
Kathie Snow:
My name is Kathie Snow. I live in Woodland Park, Colorado, and my son, Benjamin Snow, is 22. Benjamin has cerebral palsy and he uses a power wheelchair and a computer to do his work on instead of using a pencil, and some other adaptive devices, and he just graduated in 2009 with his associate’s degree from Pikes Peak Community College, which is our local community college in Colorado. And he was in Phi Beta Kappa which is a national academic honors society for community colleges. And he loves online courses because he likes to stay up till 2 in the morning and sleep until noon so he has now enrolled for his bachelor’s degree at Arizona State University in Tempe. So he’s living at home but attending ASU. So of course we had to drive down to Phoenix in May and buy him an ASU sweatshirt and all the paraphernalia, you know, for college students so he’s living a great life.
Alyne Ellis (interviewer):
And what’s he majored in?
Kathie Snow:
Political Science and Media Studies so he wants to do something in public service or politics or as a writer of some type to influence and change the world!
Alyne Ellis (interviewer):
How has the cerebral palsy affected Benjamin? You mentioned a power chair. How else has it affected him?
Kathie Snow:
Cerebral palsy affects his hands so he uses a laptop computer. We got him on a computer when he was about four years old, today that’s not uncommon but way back then it was because we realized that, you know, hand writing was not going to be a very efficient, you know, mode of writing for him and he, you know, uses adaptive silverware and a divided plate and then he has a self lifting system so he’s learning how to transfer himself from his bed, you know, this big thing in the ceiling and it has a track that goes across the hall into the bathroom so that he can get out of bed and hook himself up and get into the bathroom and it takes him into the shower and that kinda stuff. So he needs, you know, adaptive equipment for the bath, and the shower, and we’ve done a lot of modifications on our home so that Benjamin can go and do what he wants and how he wants and modify the kitchen sink so he can get up there, you know, learn how to wash his own dishes, be as self-reliant as possible.
He also has, like, a low vision diagnosis and of course they make all kinds of adaptive things that sometimes are very expensive, and we always believe in doing it yourself first. It is possible, I got colored dots at the office supply store and stuck them on every single key on the computer and, like, I put his name in yellow and then of course you cover up the keys so you have to, you know, write on top of them what the letter is. Then we put, like, red on one row and green on another.
So when he first started typing he would type with one finger, he’s right-handed and he pretty much does everything with his right hand and so I would just say, you know, find the yellow keys for your name and so he learned how to type his name right away. And then I’d just kinda give him a visual clue to look for the green row, look for the red row, whatever word he was trying to spell. So he got pretty fast at one-finger typing and basically after just a few months we took those stickers off because then he’d memorized the keyboard.
But then when he was about 16 he wanted to be a writer and at one time he wanted to be a film critic because he wanted to take Roger Ebert’s job at one time so we got him the voice-recognition software and he actually went and took a class at the community college at 16 in that, uh, software, because we didn’t know how to use it and so he took that class over the summer and he audited it so that, you know, we didn’t have to worry about grades.
But he was the only, I mean it’s interesting, that, you know, a lot of people with disabilities need that and that’s what it’s created for but now all kinds of professionals use voice recognition because they don’t want to have to type so they have versions for doctors and lawyers and other disciplines. But when he took that class he was the only person with disability in the class and he was the youngest person in the class of course, at age 16. So he uses both, depends on, if he’s doing e-mail he might just one-finger type but when he’s doing his school work, you know, having to write a paper, then he dictates.
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No more therapy
We should not let Benjamin’s disability run his life, it should not run the family’s life, I mean kids don’t want that, you know, people with disabilities don’t want that and so we just decided to, you know, start doing things differently and as a result Benjamin stopped going to all the therapies when he was six years old and one day he just said in tears, he says “Mommy, “ he says “I don’t want to go any more”, he says “I’ve been going all my life” and that was really stunning that, um, a six-year-old kid could say they’ve been doing anything all their lives and that’s how he saw his life, and he said I just want to go home after school like the other kids and do what I want to do.
So, and, I had to back up here for a second because whenever I was talking about those adults I learned from, what they would tell me over the course of eight months that I got to know them very well is, they would say stuff like, “Well, I think I must be a big disappointment to my mom and dad,” and I’d say “well, why would you say that?”. “Well, you know, my mom took me to therapy all my life so that I could walk” and you could put in any other functional skill, you know, talk, feed yourself, you know, read at grade level, whatever, and they’d say,” I, you know, my mom took me to therapy all my life and I was never able to walk and, and I know I must have disappointed them, that I couldn’t do what they wanted me to do. You know, it must have been important to my mom because she spent more time with me than with my brother and sister and my brother and sister would get mad because sometimes my mom was spending more time with me,” and you hear these stories and then, you know, they’d go on and tell me what it felt like to be taken to therapy all their lives. I mean what it felt like, that it was painful, that it was, you know, they didn’t get to what the brothers and sisters were doing. I mean their lives were just totally different because of, and not because of the diagnosis but because of services, you know, and I think that’s a really crucial point that I try to help other parents, you know, learn in my book, in my writings, my presentations that it’s not about the diagnosis it’s about the services.
And, you know, in other words, the day after Benjamin was diagnosed he did not change, he was the same kid he was the day before the diagnosis. The person who changed was me and the person, and other people who change are parents. And so we start treating our children like they have disabilities and then, you know, a lot of times they end up having more disabilities because we want to get all these diagnoses and get all these treatments and services and anyway, uh, the adults would say to me finally, “you know, I wish my mom and dad could have loved me just the way I am. Because what it feels like to them is “well we’re trying to change you”, you know, through all these interventions and therapies and treatments and all that kinda stuff.
And so by the time Benjamin was six, I mean, I, I had lived with that for about three years not knowing what to do with that information, it made me very uncomfortable at the time because I was, like, Therapy Mom of the Year. I mean we had, we turned our living room into a therapy clinic, you know, I mean so we were into therapy basically seven days a week and it, you know, it ran Benjamin’s life and it ran the family’s life and, you know, took over everybody’s lives in the family and, and so when he was six then he says “I don’t wanna go any more, I just want to go home,” I just….you know, his final say on it was in tears, in a rage, you know, just screaming at me, he said “going to therapy doesn’t make me feel like a regular person” because he was included at school, he was just one of the kids, and he was included at cub scouts and he played on a park and rec T-ball and, you know, and yeah, he was the only kid using a wheelchair and adaptive equipment but he was doing all the things the other kids were doing.
So that day was, uh, you know, an epiphany. That was a life-changing, you know, moment for us and so I told him, I said “Okay son, you don’t have to go any more” I said, but, I said, “We need to help you do the things that you want to do.” I said “there are still some things that your body needs help with to do what you want to do” and, and I mean that, you know, just saying that, “to do what you want to do” because most therapies, the interventions and services, are not focused on what the person with disability wants to do; it’s focused on what we want them to do.
And so I asked him that day, I said “Do you still want to play on the computer and, you know, watch TV and play, you know, use the remote and stuff?” and he said “Yeah” and I said “well, you gotta get your head up,” ‘cause, you know, the way the cerebral palsy affected him is his head was down, his shoulders were rounded in and, well, I knew how to do that because I’d been taking him to therapy all those years, you know and the therapist would get behind him and would stretch his shoulders back, you know, and those muscles would get real tight and your shoulders are a bent down and pulled in, and your arms are curled in in front of you and your hands are curled up and fisted and your head’s down, you’re doing it again, you can’t do much.
And so, you know, we’d take him to therapy once a week and they’d do that kinda stuff and so I thought well, you know, let’s do it the most natural way possible and, ‘cause he had told me, and I said, “We need to help you do what you want to do,” I said, and he looked at me, you know, and he said “OK Mommy,” he said, “but no home programs,” you know, he said “you’re not the therapist”. Kids don’t want us to be therapists, they want us to be moms and dads and so we thought, well, the most natural way of doing that, you know, well, we got to dress him at night, you know, undress him, dress him in the morning and we thought, well, you know, instead of pullling him aside for 30 minutes and saying here, let me, you know, do a shoulder thing I just would say, I’d be taking his pajama shirt off and say “how about a shoulder massage?”. And, you know, like who’s going to turn down a shoulder massage? So we thought, OK, we can do this two times a day, 365 days a year, you know, instead of doing it once a week at therapy.
And so, you know, that just made sense and he’d watch “Jeopardy” or “Wheel of Fortune” and he’d say “OK, Mom, pull on my legs” which the therapist would call, you know, uh, hamstring stretch and so I’d, you know, we’d lay on the floor and he’d be watching TV and I’d stretch his legs out and whenever he said stop I would stop, I mean when he said OK that’s enough, that hurts.
And, you know, when you kinda stop and think about it a lot of times when kids were getting, you know, “professional services,” when they say stop nobody listens to them. And that’s a really, really detrimental, dangerous, um, habit, that gets into because then kids realize that they have no control and no power over their own lives and other people do. So we just did all kinds of stuff, like instead of doing, like, you know, water therapy he and my husband would just play in the hot tub, you know, and so, you know we just incorporated some of the, again, some of the skills that we’d learned from therapists and again it’s not that therapists are bad people, a lot of times people don’t hear me correctly and they think “Oh you’re bashing therapists” and so I’m like “No, we need their expertise but we need them to teach us again how to incorporate you know, beneficial fun activities”. I mean instead doing water therapy the whole family can go to the YMCA and go as a family, you know, and do stuff together instead of all these things taking the child with disability and maybe one of the parents away and, you know, it, it can fracture the family and I don’t think that kids with disabilities want that to happen and those families, we certainly don’t want that to happen, either.
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Nothing is “wrong”
Disability is a natural part of life, I mean there have always been people with disabilities in the world, there always will be and those of us that do not presently have a disability if we live long we will have one, through accident, an illness or the aging process and so when we stop thinking of it as something, you know, that’s wrong with a person, I mean there’s nothing wrong with my son, people, people come up and they’ll say “oh you have a child with a disability” and I say “yes”, “oh what’s wrong with him?” and, I say, like, “there’s nothing wrong with him, you know, he happens to have cerebral palsy”.
But just that whole, I mean my whole shtick if you will is about attitudes and perceptions and language because those are the basis of everything that we do so if we keep the same attitudes that, that, you know, a child with a disability is sick, or ill, or there’s something wrong with him, if that’s our attitude then of course we’re gonna, you know, spare no expense or no effort to try to fix him and make better or make him OK instead of saying he’s fine just the way he is. You know, and that’s what we feel about Benjamin, he’s perfect just the way he is, I would not change one single thing about that kiddo. He’s not a kid any more, he’s 22 and he has a beard so he doesn’t like me calling him a kid but he’s my kid. But, you know, it’s like we just need to get him what he needs so if he needs a power wheelchair then we get it for him. He needs a, you know, computer to do his work on instead of a pencil. I’m sure that we could have spent, you know, 22 years trying to get him to write with a pencil but at what expense to him, instead of just letting him get on with his life and writing the way works best for him.
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The need to be better
We’ve talked with Benjamin for many years about the difference that he and, for example, his sister will experience, that his sister Emily is two years older, and, you know, I told him at about the time that he could, I thought he could understand me, he was in, you know, middle-school age or whatever, that it would not be unlike at the time of the Civil Rights Movement when if, for example, you know, for many years if you’re African-American, you know, a person of color, a black person, there were certain jobs that were just off-limits to you and you would not be hired under any circumstances whether you’re qualified or not. So I would, you know, tell him stories like that and how, that people at that time, if you’re African-American you had to be “better”, you know, (quote, unquote), than a so-called white person, um, to get the same job and, you know, it’s too bad that things are that way but, you know, that’s, that’s reality and we have to deal with it.
And so the same is true about people with disabilities or other kind of, you know, so-called differences that, that, you know, he is going to have to be better in many ways, he’s going to have to, uh, you know, prove himself, you know, make sure, do everything he’s got to do to make sure that people see beyond his disability.
And you know a lot of people with disabilities today, adults, what they’ve learned to do is, you know, knowing that there is a lot of, still, prejudice and discrimination and you know I don’t think it’s, uh, it’s intentional, um, most people today have not grown up with people with disabilities and that’s why, you know, inclusion in public school is so important because then, you know, the kids that my kids went to school with, you know, grew up knowing Benjamin and it’s like “so he uses a wheelchair, so what?”. You know, “so Doan has Down Syndrome or, you know, Chris has autism , so what,” you know it’s like “they’re our classmates and they’re our friends,” and so that makes a huge difference whenever they’re adults because they are familiar with it but so many adults today, you know, did not grow up with a person with disabilities that they knew as just a regular person.
And so as regarding Benjamin, you know, today, and what a lot of adults didn’t learn to do in the job market is like to apply online, you know, or to apply some way, you know, by mail or whatever. The point is to get your credentials, get your resume in front of somebody so that they can say, “Wow! Look at this person’s experience and background education,” or whatever, so that that is the first image of the person and then when it’s time for the actual job interview well, yeah, then somebody might be “Oh, wow, I didn’t know he used a wheelchair, I didn’t know he had, you know, whatever disability,” but hopefully then that helps you get your foot in the door.
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Benjamin Snow, son of Kathy Snow
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Benjamin on his award-winning film
My name is Benjamin Snow, B-E-N-J-A-M-I-N Snow, S-N-O-W, and I’m 22 years old. In, in college, I plan on running for, running for public office some day. I won a national film award. In the summer of 2006, I wrote, produced and directed and was in a 60-second film entitled "Thumbs Down to Pity!" [click the title of the video to watch on YouTube] which basically talked about Hollywood’s inaccurate portrayal of people with disabilities on screen. And, and it was a national contest sponsored by the MSNBC Company, Toshiba and USA Today and my film was picked as one of 35 semi-finalists out of over 330 entries, and the 35 semi-finalists were sent to a group of what the Chairman of the contest calls distinguished judges, or, or distinguished jurors, which included Walter Cronkite, Brian Williams of NBC News, Anderson Cooper of CNN, the Dalai Lama, then Senator Barack Obama and, uh, many others. And then my, my film was then picked as one of five semi-finalists, as one of five national winners in the 2006 Film Your Issue contest and I was flown to New York City at the, at the United Nations for, for an awards ceremony at the United Nations.
And, on a different subject, I was, I, I was the youngest delegate to now President Obama at the, at the 2008 Colorado Democratic State Convention.
How Benjamin’s friend sees him
I, I had a friend that, uh, that, that was a friend of one of my Mom’s that, that basically liked learning about, learning, uh, about me. His name was Ed, Ed Roberts, and he, he basically said to my Mom, and these are his words not mine, when people look at me, or stare at me, I am not so much of a (quote) "helpless cripple" and I quote "as I am a star". Meaning that, that whenever people, whenever people assume, whenever people stare at, stare at you or, or assume the worst of you, you, you have to…he thought of it more as, as a compliment, the same way…or, or as a, as a thing of good-doing, if you will, or he just, he just let it hit him the same way that, that you would look at, say, Tom Hanks or Harrison Ford if you saw your favorite movie star at a, at a restaurant for example. And so that’s, that’s how, that’s his attitude and that’s how, that’s how I define it. I don’t let it, I don’t let it define my life at all, I put up with it.
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