Interview with Diane Shipley: Journalist, Feminist, and Disability Rights Activist

Interviewed by Annamarya

As a journalist, writer, and blogger, Diane Shipley has contributed her fair share to magazines, newspapers, books, online publications and blogs including The Guardian, The Los Angeles Times, Mental Health Today, The Frisky, AOL, The Telegraph, and Woman’s Weekly, where she addressed technology-related questions in “Ask the Expert” (she attributes landing that gig to her “passion for gadgets”). She’s even written two author profiles for the resource guide, 2010 Novel & Short Story Writers Market, and a chapter on truth and denial to the unauthorized “Glee” companion, Filled With Glee (you know, about that insanely popular FOX series that everyone’s crazy for).  For her work, the 32-year-old UK-based wordsmith covers a wide-range of topics, from fashion to pop culture, literature, feminism, and health & disability. As someone living with chronic fatigue syndrome, Shipley understands the challenges, bigotry, and stigmatization people with disabilities face every day. So for her, writing on disability and rights is a matter of raising awareness and building a community – of bringing into light issues of ableism and discrimination that are both blatant and covert. In this interview with the Daily Femme, Shipley shares her views on why using “crazy” and “retarded” negatively is reflective of the “discrimination and ignorance people with disabilities face,” how both pop culture and the medical world affect collective acumen and treatment of disability and illness, and how the feminist movement is not as inclusive of disability rights as is necessary.

Your work as a journalist & blogger focuses mainly on pop culture & disability rights. How did you come to take on the charge of those two topics?
The disability rights stuff reflects my life: I’m a woman with disabling illnesses and have had my needs ignored and stigmatized more times than I can count, which is alienating and frustrating. I know my experiences are similar to other people with disabilities (PWD), and that many have it much worse than I do. I hope that my writing might raise a little awareness or at least make some PWD feel less alone. It’s the writing I usually get the most positive feedback about, so I feel like it’s needed, although I really wish it weren’t. (Having said that, I want to make it clear I’m not trying to speak for everyone with a disability; that would be presumptuous, if not impossible.)

The pop culture stuff ties into it, really. Partly because I wouldn’t be writing about TV if I hadn’t had the chance to watch so much of it over the last few years (profound lassitude has the occasional upside!) and partly because I’ve always been interested in the ways pop culture reflects and reinforces social norms, including gender roles. That intersects with my work on disability rights, because the portrayal of people with disabilities on television tends to range from problematic to non-existent.

You’ve written extensively on how your feminist views intersect with your work on disability issues. Do you feel that the  feminist movement as whole is fully inclusive of disability issues?
Sadly, no. To take feminist blogs as an example: a lot of independent bloggers are super-aware and inclusive, and I’ve learned so much from them. Even though I’ve been a PWD for over a decade, I wasn’t really aware of the extent of the problems faced by women with disabilities until I started reading a wider range of feminist blogs. Sites like This Ain’t Livin’, Shakesville and the dear departed FWD/Forward are fantastic resources that raise awareness, and of the more mainstream online spaces, Feministe and British site The F Word seem to really take inclusiveness seriously. But the larger mainstream sites often perceived as feminist seem to be aimed at an able-bodied readership, and I don’t feel represented there. In feminist media as a whole, I also often feel excluded by the use of ableist language. And I’m not able to participate in a lot of feminist campaigns, like marches, because of the limitations of my disabling illnesses, which isn’t the fault of the feminist movement, necessarily, I’m just not sure that sense of exclusion is fully understood.

What can we do to raise more awareness as feminists?
The difficulty with trying to raise awareness of disability issues is that PWD may not be in a position to campaign for themselves, leading to their needs being under-represented. When we talk about feminism, we often discuss how it intersects with race, class, gender, and sexuality. Disability needs to be regularly discussed as part of that equation, too.

How important is it for feminists to get involved in disability issues?
There’s really no division between disability and women’s issues in many cases. For example, women with disabilities are raped more often than able-bodied women, so if you care about stopping rape, by default you care about an issue affecting PWD. All oppression is connected, and it should all be of concern to feminists.

Recently, government funding to programs serving people with disabilities in the United States have come under attack. For example, a version of the  House budget would have significantly cut funding to the Special Olympics,  an organization that Florida governor Rick Scott cut funding for in his state budget, announcing it after giving praise to the group. What do these cuts say to the general public about our feelings on disability issues?
I guess there are two issues here: one is that programs serving people with disabilities are under attack, which is so disheartening and shows what low status PWD still have. The other issue is the threat of cutting funding for the Special Olympics (incidentally, I’ve always hated that term: it’s so patronizing).That’s really disheartening, because sports for PWD have low status and lower funding already. But I have to say, I’m much more concerned about PWD having enough money to live on and adequate access to essential services.

What would be the ramifications if the US government were to dramatically cut funding to programs serving people with disabilities?
I live in the UK, so I can’t speak specifically about the US situation, except to say I’m sure it would be disastrous for a lot of people. When the economy falters, essential services are often cut in order to save money, and this often hits PWD the hardest, especially if they’re not able to work. People are forced to live in dehumanising situations under unbearable amounts of stress. Some of them kill themselves and their families. In a rich, allegedly civilized country, that shouldn’t happen. It’s especially hard for me to understand why so many Republicans in the US believe people should have to pay (and such exorbitant amounts) for the services and treatment that are essential to their survival. It’s punitive and discriminatory. And UK politics is quickly following in America’s footsteps.

In March, you wrote an insightful and honest blog post on how certain words we use in daily life, such as “lame,” “retarded,” and “crazy,” come from prejudice and signal discriminatory feelings. You say in the piece that people call you “political correct” but for you, it’s not about “political correctness. It’s about inequality.” What led you to write the post?
Twitter, I think. And blogs, and the internet, which are the main ways I interact with the outside world. I felt like there’s been a resurgence of the use of the word “retarded”, which I find really offensive. I also see a lot of uses of “lame” and “crazy” and other even less flattering terms for people living with mental illness. It struck me that maybe when people use these terms they don’t realize they’re talking about real people. When an acquaintance says they were “walking like a cripple”, do they know they mean… me? I want to stress that I don’t think everyone using these terms feels discrimination towards PWD. I think they just don’t think about what they’re saying at all, in a way that wouldn’t be the case with words referring to other minority groups. That both reflects the low status of PWD in our society, and perpetuates the problem.

In the piece, you make no qualms about admitting to using some of those words yourself. On the surface, the post may seem contradictory but the way I read it, it was more of a reflection on how everyone, including you, can unconsciously be hurtful with words without realizing it. Have you received any backlash, then, for writing it?
I’m glad you saw it that way, as that is how I meant it. None of us live in a perfect world and we’re all imperfect in our attitudes and language use, even feminists and PWD. I did expect a backlash, but there really wasn’t one. I even held off on publishing the post for about a month because it felt so personal to me and I was scared of attracting negative comments. I do know of a couple of people who didn’t entirely agree with me, but they were polite about it.

How do you, and how can others, phase these words out of their vocabulary?
This is something I’m still thinking about. I want to allow the possibility for words to be reclaimed: for example, some people with severe mental illness like to use the word “crazy”, and some people with physical disabilities enjoy the word “crip”. For them, those uses are inclusive and empowering, even if not everyone with those illnesses would want to use them, and I don’t think they should be phased out.

I think it’s really about what you’re saying and why. So much of language use is lazy and automatic. If we could all be a little more aware of what we’re saying, how it might be contributing to an atmosphere of intolerance, and come up with alternatives, that would be brilliant. Having said that, as a writer, I’m speaking from a position of privilege. Some people speak English as a second language and/or have low literacy, and would find this really difficult. This is why I don’t want to play “language police”. I really think the core problem is the discrimination and ignorance PWD face, and I hope if we can reduce prejudice and stigma, then certain words will naturally fall out of favour. Of course, the words we use can also perpetuate ignorance, so it’s complicated. For now, I’d be happy to just see a lot more serious consideration of the topic.

There was some contention over you listing “blind” as one of the words that comes across as bigoted. A commentator argued that the word is different from the pejorative use of “gay” or “black,” as it speaks “metaphorically about an objectively measurable functional deficiency” when saying something like “blind to the consequences.” You respond that it’s still negative because using “blind” in that sense still denotes ignorance and inferiority. Do you often find people try to justify the use of certain words?
Oh, yes. Even me! We all have our favourites. I remember when I first started reading about language and discrimination, going round in circles thinking, “Why can’t I say that? I like it. Isn’t prejudice the problem, not language?” But the problem is both. I have a real problem with able-bodied people using disability as a metaphor for everything from ignorance to disaster, and I feel like I read “blind” everywhere, including otherwise very right-on feminist publications, hardly ever to simply mean “without sight”, always with a negative value judgement attached.

One thing I want to talk about is disability in pop culture. For example, the Annie character on the soap opera All My Children has a mental illness. The writers use “crazy bitch,” “psychotic” and “nuts” when describing her through other characters. While her illness led to criminal behavior, there’s this outrageous unwillingness to help her, although other “non-crazy” characters receive forgiveness for their criminal indiscretions. This type of scenario seems worse throughout television shows. How does that affect the public perception of people, particularly women, with mental disabilities?
Wow. I don’t watch All My Children, but this is a pattern in pop culture, and in coverage of real-life crimes too, and I don’t understand it. If someone is so ill that they are not fully in control of their behaviour, why wouldn’t they deserve compassion? And whether they have a mental illness or not, throwing those terms around only perpetuates stigma. Then people wonder why Catherine Zeta-Jones wanted to keep her bipolar disorder private… Pop culture absolutely affects the public perception of illness and disability, and I wish writers and producers would take their responsibility more seriously.

In your experience, do women with disabilities experience discrimination more than men? If so, why?
I don’t know whether women with disabilities are more discriminated against than men with disabilities; I think we face a lot of the same challenges. (Having said that, disabling illnesses which affect women more than men, such as MS, are often slower to attract research investment, so there may well be sexism at work.) Our society discriminates against women in many ways (we’re still paid less than men, for starters) and in my experience, women with disabilities experience more discrimination than able-bodied people, so women with disabilities are probably doubly discriminated against.

Mental illness seems to be taken far less seriously. Like the aforementioned scenario, there’s an automatic twitch to dismiss it as “crazy” or “nuts.” In fact, in 2005, California passed an ordinance banning the sale of violent video games to minors based on studies “linking” product exposure to violence. But those studies only show correlation and not causation, and lack any exploration into possible mental issues. Why are we quicker to jump to bans rather than addressing root causes, like mental health?
I definitely do think mental illness (which I would differentiate from mental/developmental disabilities) is more misunderstood and there’s more fear and ignorance around it. Likewise, I have “invisible” disabilities, which means people often think I’m faking. I haven’t found a socially acceptable way to say “I can’t do that” without inviting a ton of intrusive questions.

I do take issue with violent video games, though. I don’t think there’s a direct link, in that people play “Grand Theft Auto” or something and then go straight out and rape a sex worker. But I do think they’re so successful because they allow people to act on their prejudices and baser instincts in a “safe” way. No-one knows for sure how much that contributes to actual physical violence, but I can’t help thinking it perpetuates misogyny and I have no problem with banning their sale to minors.

You’re right though, that we tend to look for easy answers rather than addressing root causes. It’s far easier to blame video games and movies for murder than to look at our sexist society and inadequate support for people with mental illness. Having said that, although some people with mental illnesses commit crime, in large part due to inadequate service provision, I do think it’s important to emphasize that the majority of people living with a mental illness are not violent or criminals.

Will this resistance to addressing and understanding mental health ever change?
I’d like to think so. I feel like it’s becoming more acceptable to talk about mental illness, but we still have a long way to go.

On a whole, what are the core issues people with disabilities face in the medical world?
Oh, so many, and it’s so varied, depending on a person’s particular disabilities. One of my illnesses is ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), and I find doctors are still reluctant to take it/me seriously, even though it’s a highly disabling condition that’s restricted my life since I was 19, and the World Health Organization classifies it as a neurological illness. A lot of doctors don’t seem to stay updated on new diagnoses, no doubt because of their already outrageous workloads.

I think too that doctors don’t like it when people have long-term conditions they can’t cure; I’ve often felt like a nuisance and been treated like a hypochondriac. Like many others, I’m sure, I wish medicine was about ensuring health, not just treating disease. If that was the case, I may not have become so ill in the first place, and would have not waited four years for a diagnosis. I’d also love to see medicine embrace a more holistic, whole-body approach, but that goes against everything doctors are taught to believe in.

What role does the medical world play in the way people with disabilities are treated and what rights they have?
A pretty big one, I think. People may find it impossible to access services and treatments, not to mention welfare, without a doctor’s support. And if your suffering isn’t validated by a medical professional, even close family and friends can start to doubt you. A (former) friend of mine all but accused me of lying about my health problems — until I got a doctor’s diagnosis.

You wrote that you were taking a month off from your blog to recoup and re-energize your creative juices. Has that been successful so far?
It has, actually, thanks for asking. I’ve had some ideas for non-blog writing, and also feel excited to start writing online again. One thing I’d been struggling with before taking time off is that I have a lot of opinions and personal stories to share, but I don’t want to invoke the wrath of the internet or make myself feel too vulnerable. It’s a delicate balancing act, but I’m going to try not to hold back.

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