From Aspire Magazine Fall 2019 Edition
Stuart James became the executive director of the Center for Independent Living (TheCIL) in 2014 and has spent most of the last five years working with TheCIL’s staff and partners to launch and grow programs and initiatives that meet the needs of the community. As of last summer, though, Stuart’s life took a major turn: he is now the father of twin daughters. We caught up with him at his Alameda office to discuss his views on disability advocacy and whether fatherhood has impacted his perspectives as an advocate.
Congratulations on becoming a father! How has your experience as a parent been so far, and how, if at all, does your disability factor into your parenting?
My experience as a father has been amazing, life-changing. Parenting isn’t always easy, of course, and it isn’t even always fun, but I can tell you – and I imagine most parents will say the same thing – raising children is likely the most significant, satisfying, and meaningful role that a person can play.
You know, if you’ve experienced life with a disability, especially a visible disability such as mine, you probably experienced people, lots of people, having very low expectations and assumptions regarding your abilities. I’ve literally been applauded for tying my shoes, for opening a door. Any little thing you do can be regarded as something special, even things that most people would regard as mundanities in most situations. Fatherhood has only amplified this dynamic.
In a sense, parenting is a profound thing, a big deal. Like I said, it’s been life-changing for me, and I imagine it’s the biggest emotional investment that many people will ever make. But in another sense, it’s really not that big of a deal. Parenting happens every day; countless millions are parenting right now as we speak. Still, it’s a lot more impressive than tying one’s shoes, so when people see me parenting, they often display some degree of astonishment. Folks rarely voice their surprise, but it’s conveyed in their double takes and raised eyebrows…you can almost see “Wow, how does he push a stroller and operate his wheelchair at the same time?” written across their face. When I’m out and about with the girls, especially if my wife isn’t with us, I sometimes get the impression that people are wondering if we’re safe, if we need help, as if a wheelchair user isn’t capable of caring for kids.
But you know what else I’ve noticed? These attitudes change. I – like anybody else, I imagine -- tend to take my girls to the same places…the same supermarkets, the same parks, the same toy stores, what have you. And I live in a relatively small community and so I tend to encounter the same people (not that I know them, but I recognize familiar faces) over and over again. And I’ve noticed that once someone has seen me with Claire and Sofia multiple times, whether we’re loading up a grocery cart or playing with a soccer ball at the park or whatever, that person stops seeming surprised. Once you’ve seen a wheelchair user corral a couple toddlers a couple of times, the novelty wears off. And I love this aspect of being a parent with a disability. I love demonstrating to people, simply by parenting, that parenting from a wheelchair is just as natural and beautiful and ultimately unremarkable as ambulatory parenting is.
Are there any programs at TheCIL that align with this mindset or notion that people with disabilities are basically just like everybody else?
Yes, absolutely. Well, first, maybe I should back up a bit and say that implementing programs and delivering services is not TheCIL’s ultimate objective. Our end goal is building a stronger community, a community in which people – everybody, regardless of disability – is accepted and respected and engaged and encouraged to strive to reach their full potential. Of course, services are crucial…our programs are the avenues by which we impact broader societal attitudes and expectations.
And most of our programs and events are open to everybody, including those who don’t identify as disabled. We want to see different people, different segments of the community at large, dialoging with each other, which invariably leads to increased understanding and respect and the elimination of stigma. Everybody can help educate others, and everybody can help foster mutual understanding. So I guess the answer to your question is that pretty much all of our programs line up with the notion that disabled people are fundamentally the same as everyone else. Just like everyone, we have strengths, we have weaknesses, and we benefit from a culture that helps us to make the most of our strengths and supports us in overcoming any deficits.
One of TheCIL’s mottos is “Be Your Own Normal.” We came up with this phrase because we want everyone to feel like they can be included and that they can participate and that, importantly, they can do so on their own terms. A lot of folks with disabilities are not too fond of the word “normal”…many feel that the word excludes them, and that’s because the word has so often been used as a way of dividing or separating those who don’t fit preconceived expectations and stereotypes. But “normal” is basically just that which one sees every day. When it’s a common experience, it becomes normal. We want people with disabilities to be empowered to go out in the community and do what they want to do, be who they want to be. When everybody starts regularly seeing disabled people live their lives – getting jobs, driving cars, buying homes, getting married, raising children, doing X, Y, or Z – then everyone will feel that leading ones life as an active and engaged person with a disability is perfectly normal. People with disabilities can and do pursue the same aspirations as those without disabilities; disability simply requires us, in many instances, to do things a bit differently or to use tools that many folks don’t need to use.
Do you think there needs to be a shift in the language we use around disability?
Yeah, I think we could improve the language with which we talk about disability and the experiences of disabled people. But just as importantly, perhaps more so, we’d benefit from a shift in *attitudes about* the language used to talk about disability.
Language evolves and changes in every field, and disability is certainly no exception. For example, for many years person-first language was the predominant approach among disability advocates and service providers, but in recent years identity-first language has become a strong contender. Because language is constantly in flux, there will often be times when there is no clear consensus re the preferred language of the disability community – which, of course, is far from monolithic when it comes to any matter, language-related or otherwise.
So I think many of us in the disability community could be less rigid when it comes to what language we find acceptable and unacceptable. Once we start making people nervous or afraid about what language they should use, they often stop communicating altogether and that leads to ignorance and alienation, which is a much bigger problem than failing to use the most appropriate language.
I mentioned the word “normal” earlier…there are a lot of words that people in our community uncomfortable, and one of those words is inspiration. “Inspiration” and “inspirational” are among the words many disabled people are most sensitive about. And this is because “inspirational” is often a term by which condescension masquerades as admiration. But inspiration is a fundamentally good thing. I want to be inspired to do things. When someone achieves success or satisfaction and that inspires me to try (or try harder) to achieve the success that I’m seeking, that’s a good thing. Inspiring each other is one of the greatest things that humans do. If it weren’t for inspiration, a lot of people might be unwilling or unable to get out of bed in the morning.
Maybe instead of saying that the word inspiration is offensive because it’s sometimes used to condescendingly praise disabled people for doing things that aren’t truly praiseworthy, we should instead be working to raise expectations around what disabled people are capable of accomplishing. That way, we’d eliminate a lot of condescension without sacrificing the word inspiration or denigrating the concept of inspiration, which is a concept that I feel everyone would benefit from embracing. I, for one, want to be an inspiration. I want to inspire people. I work hard to inspire others, and I appreciate it tremendously when others’ hard work inspires me.