Penny Pepper
DAO is pleased to welcome writer Penny Pepper to the DAO fold. Penny has been a writer and activist within the disability arts movement for 20 years. She has written articles for DAO, Arts Disability Culture Magazine, Disability Now and Ouch! She has also written short stories for DAO and is the author of Desires (2003), a controversially unique collection of explicit fiction focusing on disabled people, relationships and sex.
Photograph of Penny Pepper
1 December 2008
A cold and frosty morning, I've just got in after a trip on the bus. Oh my God. The world is strange and dark at the moment. The reaction of other passengers is starting to make me paranoid that herds of Dignitas death squads are lurking on every corner - and every seat of the no 19. It's not just about grumpy Londoners doing what they love (moaning), it's bordering on a serious hatred of 'the disabled'. How often of late have I heard mutterings about 'shouldn't let 'em on, it's a nuisance, they get enough already' and 'they have special buses why are they on here getting in the way?' Mothers with buggies shrill at me 'I have a right to be there too, you can wait.' I've tried stoically saying 'sorry, I cannot fold up my wheelchair and be lifted to my seat', and a pointed 'but you did not take part in the long fight for these spaces', but no one, at no time, is really interested.
Bus stories anyone? Happy nice smiley bus stories? Make me feel better....
24 November 2008
Did anyone see Special Needs Pets on Channel 4s Cutting Edge the other day?
We can usually expect reasonable quality from Cutting Edge documentaries, but this had that snide sniggering quality that infects a lot of TV these days. It's all so, so funny; look at the wobbly dog falling over, the cat having his bowel's squeezed empty, the bunny with dodgy back legs, and the obsessive behaviour of a sexually confused parrot. And never mind the pets, let's laugh at the oddball, saddo owners, more money than sense eh?!
It made feel this was merely an excuse to laugh at disability per se. And apart from the liberal use of scary language (invalid, handicapped, crippled etc.,) there was an underlying element that life as we know it, of any living creature, is clearly seen as without meaning once your neither end goes kaput.
OK so cats (et al) in pants are a little bit funny. Go on, it is. At least it was when I was 8 and forced a large pair of granny bloomers onto my remarkably placid fat cat William. Attempts to do this to my current feline Bessie would result in shredded hands, and quite righly so. But I would never, EVER consider extermination should she develop an impairment.
A particularly pertinent comment sprung out of this uncomfortably tittering programme - the pet owner who declared 'We don't put down disabled people, why should we do it to our disabled pets?' HELLO. Where has this woman been? The death warrants may not be as obvious as those effected on our crip pets, but worse, of late society IS encouraging us to draw them up for ourselves.
Be alive and proud, people. And I urge the same pride for all your pets!
17 November
Earlier I listened to Liz Carr on Radio 5 Live, fighting the corner for our right to live, gamely, in the face of an arrogant paralysed Noel Martin insisting he will do the deathly deed on himself before he's 50. (Great publicity though, especially as he keeps postponing it). If society goes much further down this line of argument, can we look to the day when there's a campaign to put down Prof Steven Hawking? Poor waste of space, clearly a tragedy, he can't have much quality of life. I mean, what the hell can he move these days? A muscle in his cheek? Oh my goodness. Call Dignitas now I say. Oh sorry. I forgot. He's the greastest brain of our age isn't he. So..... he's excused from the usual judgements about whose life has value and whose does not.
If only they'd let more of us into the media as a counter balance to say ‘hey, I'm having a fuck of a good time. Mostly. And isn't that life? Good and bad, darkness and light all jostling together to make one ridiculous painful, awful, marvellous, beautiful, adventure that is human existence?’
Bed pans in ambulances notwithstanding in relation to my own. Just keep them away from the bloody hair do, please.
16 November 2008
Hello world, is anyone there?
Photograph of Penny Pepper by the knickers in Hoxton Square
It's hard to believe that three weeks ago I was setting off in the happy Autumn sunshine to film a pitch in Hoxton Square. Oh look, another TV documentary about sex and disability. And they want me to be the gravitas. Dearie, dearie me, how things do not change. A shame the TV company managed to send an ambulance (yes, ambulance) to whisk me to the shoot. I sat, cardboard bed pans inches from my bigged up hair and reflected on how I could explain to my mum that this was not glamourous in the least, but downright effing annoying. How ironic the juxtapostion between this, and my consequent serious chat on the familiar sexual subject matter. The filming happened in the same week as an Observer survey saying 70% of respondents declared they would not have sex with a person with a 'physical disability'. Oh god. Here we DO indeed go again.
More on the documentary as (and if) it happens. If there's a recurrence of annoying toileting recepticles I'll be sure to let you know.
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Katherine Araniello (wheelchairk[at]googlemail.com) said on 2008-11-24 23:12:
Assisted suicide debate: As a physically disabled woman, my problem with Noel Miller has nothing to do with him personally or any other disabled person wishing to follow the same route. Of course this is not to suggest that I personally couldnt care less whether or not disabled people wish to die. I do feel extremely frustrated to have to listen to someone who feels that this is the option that they have chosen and I am no therapist who has the skills or ability to alter their individual decision and this is not an area I would specifically wish to involve myself with.
My concern is the propaganda this notion perpetuates in todays society which is quite simply the following: People who are dependent on others as a result of being physically disabled have no quality of life and therefore it is accepted and understood that they would inevitably wish to terminate their lives.
The issue for me is not to do with a persons right to end their life, it is to do with the negative image certain cases impart about disabled people and the worth of their lives. Its not my business whether or not Noel Martin kills himself. However the way in which disabled people are represented in the media and how that affects how disabled people are seen and treated by everyday people is very important to me. My concern is that the attention given to people like Noel Martin confirms the worst misconceptions about disabled people and the worth of their lives. I have a productive life and I work hard to be considered equal to able-bodied people. I dont want to be pitied or seen as courageous for living my life. If the only stories about disabled people in the media are ones of those seeking assisted suicide then this perpetuates the image of disabled people as leading intolerable lives that are better off terminated. It is that image which concerns me as it destabilises the existence of disabled people who do want to live. This slow drip effect feeds the public and reminds them of the fear that it could be them that ends up disabled for whatever reason. An able-bodied person who does not rely on others to live independently will not have a concept of how disabled people who are termed severely disabled live and therefore when coverage of someone having to have their hair washed and their body washed by others this is deemed to be a horrific and humiliating situation for anyone to be in.
Of course it is not at all humiliating; it is just the reality for some people, including myself. I dont think the fact that it takes at least 3 hours for me to be washed and dressed in the morning by someone else doing this for me is a good reason to end my life. And neither do I think twice about the fact that everything I do has to be done through the use of someone who is able-bodied because I physically have virtually no movement whatsoever. It is just part of life, its just the way it is. Just because you have to do something differently doesnt mean that difference is necessarily bad. Imagine if humans could fly and we were born with different levels of ability in flying. Would the ones unable to fly be expected to want to kill themselves? Or would it just be understood that they have to walk or run and accept this?
The coverage of assisted suicide by disabled people is damaging and plays into the minds of the public who are easily manipulated and guided into the most negative conclusion about how it is to be disabled.
If someone has no movement is portrayed negatively in the media than this will be sure to have a knock-on effect in everyday situations. For example, a disabled person goes into a restaurant and the waiter will talk only to their assistant in the belief that the disabled person is too sick to converse on an equal level which is reinforced when they see that person being fed by their assistant. Immediately one sees the disabled person as infantile and baby-like. Disability should be integrated into everyday life and mainstream culture so that there are other stories told about severely disabled people and the reality of their lives. This would counteract the negative ones like Noel Martin and prevent the dissemination of the idea that their lives are worthless.
Caroline Cardus (landsharks[at]btinternet.com) said on 2008-12-01 14:48:
One of the issues for me about the way the media handled this is they overlooked his current circumstances, other than referring to them briefly. I read in the reports Noel has been a wheelchair user since 1996, in bed since January due to bedsores, and his wife died of cancer in 2000. Now, if youve ever had a bedsore, youll know they are horrible and take a lot of careful management and time to get over. And frankly, if bedsores had kept me been in bed since last January, Id probably want to kill myself too. Let alone going through it in the absence of the love of my life. I imagine Id get terribly introspective. I would not see things clearly.
Wheeling in somebody to tell me life is worth living after all and Id got it all wrong would probably just piss me off further, although - nice try Liz. You did say all the stuff I wanted you to say, but Noel wasnt in a fit state to take it in, and neither should we blame him for that. Why wasnt the media asking about his quality of care, and whether or not his bereavement played a part in his state of mind?Why arent we asking if he has company and support from friends and loved ones now he is a widower, especially as now is a more restrictive time for him physically than he has been used to? Why arent we asking, why now, after 12 years of being disabled? Or, are Dignitas prepared to kill people who are disabled and who live miserable lives due to poor standards of care? Are they prepared to kill people with bedsores? What about people who are bereaved and do not wish to go on living without their partner? Does that apply to just bereaved disabled people, with or without bedsores, or everybody? Why did nobody ask THOSE questions? Instead it seemed to be a very general "Ah! this guy is disabled! How awful, nuff said. Thank heaven for people like Dignitas!" Shame on the so-called investigative journalists who were involved in covering this case.
last updated: 2008-11-05 15:57:55
More by this author : Birds Eye festival Graeae Theatre: Missing Pieces Penny Pepper: The Brown Pot Disability Arts, a monster, a myth
tags : womens issues disability arts