Michey Peckitt: Triumphing over adversity since 1978

As I write these words, we must be coming to the end of day four of a little thing I like to call ‘Oscar Watch’, as Paralympian and Olympic athlete Oscar Pistorius is charged with murder of his girlfriend, Ms. Reeva Steenkamp[1].  I shall not be discussing Pistorius directly here; I feel that even a blog must be respectful of matters which are sub judice.   However, it got me thinking about ‘super crip’ narratives.  

When we tell stories about disabled people be the stories true or fictional, disabled people tend to come out in one of two ways.  They either triumph over adversity, overcoming their disability in the process, or they seek to destroy the world, blaming it for their disability.  Basically, as disabled people we are all Tiny Tim or Richard III.  As a young disabled boy growing up, it was quite depressing, these were my role models, and they really are very two dimensional characters.  When I watch representations of disabled people in fiction, I always wonder – why can’t they just limp and it not be explained, why does disability always have to be used for character development?  I guess not to explain it would be confusing to those who do not have a disability, and it’s not all bad – I have a great regard for George RR Martin’s ‘Tyrion Lannister’ from A Song of Ice and Fire and Game of Thrones, here seems to be character with a disability that neither ‘triumphs over adversity’ and he’s no Richard III.  However, for the most part the situation is pretty bleak.

Google any article on Pistorius prior to his arrest and you often get ableist imagery[2]  – even his nickname ‘Blade Runner’ I found a little condescending.  For political reasons, disabled people are meant to eschew these images as part of the agenda of ableism.   And for the most part I agree that we should.  I certainly don’t think of myself bravely triumphing over adversity, nor do I seek to kill my brother and take over the kingdom, I certainly do not blame the world for my impairment.  And yet, even as I write these sentences, I am troubled by something.  Whatever else he may be, Pistorius can run very fast, I am sure you’ve noticed.  I can’t run like that.  Surely we can say then that his ability to run is not an ‘overcoming’ of his disability, it simply a triumph.   And as I look back over my own life thus far, there are experiences I have had, which are related to my disability at least, which it might be said, I had to overcome.  Being told at age fourteen, that I would be never be able to study A Levels (go to High School for my non-UK readers), was a definite set back.  Then spending two years after passing my GCSE’s at a college doing a Computers Studies course (basically learning to type), as I convinced my teachers I was capable of doing A Levels at age eighteen is something of which I am quite proud.  If only the nay-sayers could have seen me as I passed 1st in my class at undergraduate level, and get my PhD in 2010, their faces would be so red. 

Should I not feel proud, because it may fall foul of ‘an ableist agenda’?  Because let’s be clear about what I ‘triumphed over’, an education system that simply is not set up to deal with disabled people.  Inasmuch as disability is a social oppression, I triumphed over it.  Surely it’s OK to say that, just as it’s OK to say, even now, that Oscar Pistorius can run really, really fast.


[1] Oscar Pistorius: South Africa stunned by murder charges http://www.bbc.co.uk/news/world-africa-21475513

[2] Oscar Pistorius: Salvaging the Super Crip Narrative http://thefeministwire.com/2013/02/oscar-pistorius-salvaging-the-super-crip-narrative/ is a notable exception.

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On why ‘cripple’ is a better term than ‘person with a disability’

Dear Reader : I feel that I should apologise in advance for this blog post, it shall be more ranty and manifesto-esque than proper critique.  Amongst the many problems I have with the social model of disability, one the biggest issues I have with it, is that it leaves no tools for disabled people to understand themselves.  By re-conceiving of disability as referring to those people who are oppressed by society on the basis of their impairments, it is difficult avoid the conclusion that the social model conceives of disability as ‘abnormal’.  Whilst one can appreciate why the original ‘framers’ of the social model did this, it shifts the responsibility for the appearance of disability squarely on society’s shoulders, society is to blame for my inability to walk to the shops, attend school and indeed have sex.  It is powerful stuff, and is a useful idea, one that I am grateful for, however I do have one quibble which I have alluded to in previous posts – what can the social model offer to help me understand my identity as a disabled person.  By advancing a definition of disability where disability is the social oppression of people with impairments, how can the social model answer question ‘What am I’?

 In all fairness, the social model never claimed to be able to answer this question, but it is natural to ask.  Disabled people are also human beings it may surprise some to know, we ask questions such as ‘How are we mean to live?’ and ‘What am I?’, when answering these questions it would be nice not to be stuck with an philosophy which conceives of ‘me’ as something abnormal, freakish and lacking ability.  As I asked in a previous blog post, if you are ‘gay and proud’ and ‘black and beautiful’ then you are ‘disabled and ____’ (One reader suggested ‘unbreakable’ and I like that, though it is difficult to find a term which is not condescending)  answers on a post card.

I do have a modest suggestion, modest because it will only apply to people with certain kinds of physical impairments.  We should re-introduce the word ‘cripple’ in everyday usage.  Rather than just conceiving of me as social oppressed due to my inability to do x – the term, ‘cripple’ gives me a positive description I can use to understand myself and describe myself to others.  I walk with a pronounced limp owing to my cerebral palsy.     As soon I leave the house I have to alter my position and posture, making tiny alterations every second.  Every movement of my foot, swing of the stick and grip on the stick handle has to be carefully co-ordinated.  Without fluidity in my walking, I am constantly planning every move.  I am always aware of my body as an object to be controlled, not really ‘part of me’, and yet – and at the same time – it is certainly ‘my body’ which I need to constantly reorganize.  The world, that is, my surrounding environment appears as something hostile, and something I am  part of, but certainly not ‘in’; it is an object which I must continually manipulate, as opposed to being a friendly place, somewhere where I feel at ease or at even at home. Within this hostile world, other people often appear as obstacles to be avoided, not just because I fear bumping into them and hurting myself, and others.  Even a hand offering help with shopping bags can appear hostile as it is an unexpected disruption to my ‘walking plan’.  It is to live in a world which assails the body and self, and I live in constant hope that my last adjustment will allow me to survive.

 In short, I walk in a crippled way.  Calling myself ‘crippled’ says far more about me, about how I engage with the world than ‘disabled’ and it is certainly far more accurate than ‘person with a disability’ – I am not ‘with’ a disability, my disability is not a part of me that can be removed with ease.  I recognize that some won’t see this as a positive thing, to them I ask, is defining myself as the end product of societal oppression more positive? 

The term ‘cripple’ has another positive effect for me, if it is used correctly.  Cripple is not a medical term, but a social one, referring to how I walk.  It re-unites my experience of my impairment with my disability.  I have never truly accepted that disability is entirely a social problem with a societal solution.  A world where I had complete access to all facilities is still a world where I would be in pain and limp.  The social model would determine this to be part of my impairment, I’m not so sure.  People’s reaction to my pain and my walking gait is a social experience, that look of pity or concern from across a corridor or on a crowded train does much to ‘undermine my psychoemotional wellbeing’ to borrow Carol Thomas’ terms given in a previous post.  Yet despite, its oppressive effects, it seems unfair, or at least unreasonable to try to prevent people from reacting that way, I mean it is only because they care.  We have to accept that there may be some things about our physical bodies – its crippledom as it were, which one could conceive of as disabling, but that a disability exists does not mean there is any remedy for it that society can or should provide. I am a cripple, to be a cripple is to be in pain and to try and avoid future pain.  Pain is bad, not to recognise it in others not to react with pity or concern is not a triumph of social modelism, it is pure psychopathy.  

 

So that is why cripple is better than person with a disability.  It avoids a rather depressing social ontology offered by the social model; I am more than the sum total of society’s reaction to my impairments.  It gives me a story about myself and my relation to others, providing me with a new mantra  – I am a cripple, therefore I limp! 

Mik Scarlet, Disability and Sex: A Defence of Para-Doxies

Since I was concerned about the snow, I remained in doors for most of today, and got some writing done.  I also finally managed to see Becky Adams’ and Mik Scarlet’s appearance on ITV’s  This Morning off YouTube.

I’ve always liked Mik Scarlet’s writing on disability, his blog is something that everyone who writes on disability should check out, he’s a really good writer and role model for me as a disabled person.  When I (re)-started this blog a few weeks ago, I read a lot of his and Victoria Wright’s work  http://www.victoriawright.net   So really check him out, his article in Disability Now ‘Mik’s rough guide to pulling’  is very good.

On the issue of Para-Doxies we do part company though.  Mik Scarlet was on the show, as the ‘no person’ with regards to Becky Adams’ Para-Doxies.  As he writes in his blog, he has three reasons he is against the idea of Para-Doxies, the second of which is:

I am opposed as it causes issues for the way society thinks about disability. It not only effects disabled people but everyone. For disabled people, it means they grow up in an atmosphere that makes them believe that they just aren’t sexy or potential sexual partners and for the non-disabled community it plays a part in continuing the prejudice around disability.[1]

I have a lot of sympathy for what Mik is saying here.  My initial reaction was a concern that a ‘special needs brothel’ to borrow Mik’s own phrase legitimises the idea that disabled people aren’t sexy and never could be.  Decades of the disability movement and we’re still trying to convince the Average Joe and indeed Josephine that we are human beings and we have sexual need, screw that!

But then I realised something.  Society, unfortunately, already sees disabled people as asexual.  Becky Adams or the idea of Para-Doxies did not create this perception, but Para-Doxies’ exists because of that perception.

Scarlet continues:

If you grow up or become disabled so assured that the only way you’ll ever experience sex is to pay for it, then that is what you will do. Thus the need for this proposed service is fuelled by the attitude, so it becomes self fulfilling.[2]

Again, I had this concern, and as a matter of fact I did grow up thinking that only way I’d experience sex was to pay for it.  Para-Doxies wasn’t even a possible idea when I was growing up, and I thought that way, although I was wrong to do so.  And if I can think that way without the existence of Para-Doxies, I feel that the concern that existence of Para-Doxies will further entrench such an erroneous way of thinking about ourselves as disabled people to be moot.  At least with Para-Doxies those people who indeed cannot respond to their sexual needs can find some relief.

Like Mik, I could be described as being ‘lucky’ with my impairment.  I can still walk, talk, do most things, I am married.  Like him, my disability has affected my ability to have erections and act on what sexual desire I do experience.  However, I am aware that other disabled people put simply, are not so lucky.  I am sure they would prefer to have their sexual needs met within a loving relationship, but that is not always possible.  My early sexual experiences were had at University, I had good friends, but some disabled people truly believe that nobody would want to touch them.  As I was researching this blog post, I found this a comment on the BBC Ouch blog from 2008:

At 11:13 27th Oct 2008, fatalefem wrote:

Well I haven’t had sex yet, but it wasn’t because nobody would want me. I have EDS, and allthough I use a wheelchair, I look pretty normal. And I’m very flexible 😉

In fact, most guys don’t believe I’m disabled at all, they think I’m too pretty to have anything wrong with me. So I think, that if I really wanted to, I could have sex with someone who really doesn’t want to with a disabled person.  But why would I want to with someone that narrowminded?[3]

I don’t mind saying when I read that comment, I was close to tears, Para-Doxies didn’t create this perception ‘fatalefem’ came to that conclusion all by themselves, written in 2008 it was a Para-Doxies-less world in which he wrote these sentences. Whilst he may choose not use the services of Para-Doxies, he hopefully is in a loving relationship; I’d like to think so.  But if he isn’t, or feels he will never be able to, then, there is Para-Doxies.

Normal Bodies can be Disabling?

I’ve always found the quest for normalcy to be a troubling notion.  It’s perfectly OK  to what to have a ‘normal life’, a life relatively free of stress, with nothing impeding your day-today activities.  It’s a very seductive notion. Surely, a life where our impairments were either themselves reduced (possibly through medical intervention), or at least made socially irrelevant (i.e. made not the cause of a disability) would be ideal?  In general terms, I’ve always believed to be the case; I very much support the following statement by disability theorist Carol Thomas:

 

Disability is a form of social oppression involving the social imposition of restrictions of activity on people with impairments and the  socially engendered undermining of their psychoemotional wellbeing.[1]

 And yet despite my general support, I do have a question, how are we understanding the ‘social’ of ‘social oppression’.  Is it only ‘social’ when we engage with other people?  Can our quite personal own experiences of own impairments also be considered social?  After all, it is a social creature that is experiencing them.  I suspect that some disability theorists – not necessarily Thomas, but some would actually regard such experience as mere ‘impairment stories’ and therefore nothing to do with disability at all.  I have always resisted such a categorisation of impairment and disability.  Life, unlike disability studies is a far too messy and complex affair to fit into such neat little boxes. Impairments, in my view may have in, and of themselves, disabling effects and I have a story which I hope shall illustrate my point.

I was born with cerebral palsy and epilepsy, and around the age of two I was put on Tegretol and Clonazepam for the epilepsy.  These allowed my fits to be controlled.  My fits stopped when I was around seventeen.  However, my epilepsy medication – as I mentioned in passing a couple of posts, ago had made me impotent.  And not just impotent, since I had gone through puberty, having to take quite heavy and regular doses, I had not only never experienced an erection; I had never really had a sexual thought.  Then, two years ago, when I first considered moving to Japan with my wife, I decided that since tablets in Japan are costly – no NHS system here of course, and in view of the fact I had not had a seizure for at least sixteen years, that I would go off my mneds.  So with my neurologist, I began reducing the dose every month.  Six months of reducing and I felt that something was wrong.  It was a sensation I had not felt before and I did not like it one bit.  Then, at my monthly appointment with the neurologist it dawned on me what it was when he said:

 

`Has there been any return of sexual function Mr.  Peckitt?’

For the first time in my life, I was horny.  And I did not like it.  It may appear like an odd thing to complain about, and I guess I shouldn’t expect too much sympathy, but imagine, at the age of thirty-three to suddenly start responding sexually to the world.  At the very least its very daunting.  In some academic circles, I say I struggle with my sexuality, leading some to think I am gay – why must a struggle with your sexuality always be with the fact you may be gay, why cannot one not struggle with heterosexuality?  For female bodies to suddenly gain a significane as sexually attractive after thirty-three years of just being one type of body amongst many can be very disorientating.
 
It is difficult not to view this development of my sexuality in some ways to be quite disabling, in fact part of is tempted to consider it an impairment.  That line ‘has sexual function returned?’ still haunts me.  For something to return, it has to have been there before, so as I experience my own body now, it is difficult not to view ‘sexual function’ as an impairment.
 
However, it is also has a disabling effect.  I klnow that many would say that experiences to do with medicine, my coming off anti-epileptics is not part of ‘the social world’ but belongs instead to the rather cold world of medicine.  But since it had the effect of altering my sexuality, It would take a rather cravenly way of viewing the ‘the social’ not to regard that medical intervention  as having social effects.  Sexuality is a way in which engage with the world, for their to be a ‘sexuyal response’ we have to be responding to an other. 
 
Also, since I still struggle with it, it could be said, to borrow Thomas’ terms, undermine my ‘psychoemotional wellbeing’.  Sometimes, I consider going back on Tegretol, then I might feel ‘normal’.  Watch this space.


[1] Thomas, C. 1999:  Female Forms: Experiencing and  Understanding Disability.  Buckingham: Open University Press.   p60

 

 


 

 

I am disabled, therefore I…go to strip clubs?

I have been struggling for a coherent thought, so Dear Reader I have a question for you all. 

 

If you can be black and beautiful, or gay and proud, please fill in the following —- ‘Disabled and___’

 

I cannot find the words to fill in the blank either, I’ve been trying for thirty-four years, give or take puberty and some time at University and I can’t do it.  There simply are no words.  Others have suggested ‘proud, angry and strong’ which is from a Johnny Crescendo song.[1]  It is stirring stuff, and I want to be able to get behind the idea of ‘an affirmation model of disability’, as advanced by John Swain and Sally French in their article ‘Towards an Affirmation Model of Disability’. 

However, I have a question. Am I to take the Johnny Crescendo song and his motto of ‘proud, angry and strong’ as my cue – because I do have a problem with this, in fact two problems.

Very little good comes of anger, even intellectual anger runs out of steam in the end – usually into writer’s block.  However good it feels, anger is cheap liquor, everybody drinks too much of it and everybody wakes up with a headache.[2]

So no, anger is definitely not my bag.  Only I have a problem with ‘Proud’ too.  Of course, I am not ashamed of having cerebral palsy, of having a history of epilepsy, chronic pain or being impotent due to those pills for epilepsy.   Not ashamed at all.  But ‘being proud’ always sounds too much like an apology to me, and one should never apologise for oneself.  Instead it should simply be stated as a matter of fact.  There are few times I have brought my disability up in public, but when I do, it goes like this.  We’ll assume they already know about my cerebral palsy, epilepsy and chronic pain, I have just mentioned that I’m impotent.

 

PERSON: Really?

ME:  Yes, Really.

PERSON: You’ve never had sex?

ME: No, never.

PERSON: I don’t believe you.

I never know how to answer that last response, other than to try to emphasise the truth of what I said.  But occasionally I do get asked the following:

PERSON:  But surely you have sexual desires.

ME: Yes I do.

PERSON:  So, what do you do about them?

And here’s where I fall short.  The fact is there’s very little I feel I can do about them, and I used to sheepishly respond ‘very little’, a response that was universally met by pity, and I hate pity.  Sympathy in the dictionary is too close to shit[3].  So I have a suggestion, one I hope the authors of ‘Towards an affirmation model of disability’ do not find distasteful.  If you are disabled, and some asks you what you do about your sexual desires, whether true of not, say the following:

‘I go to strip clubs’

Feel free to embellish, if my interlocutor is British or American, I occasionally say, ‘I go to Spearmint Rhino’.  But I much rather be remembered for my patronage of a strip club, than for being ‘angry, proud and strong’.

 

That’s how I fill in the blank.  Thank you for your time.


[1] John Swain & Sally French (2000): Towards an Affirmation Model of

Disability, Disability & Society, 15:4, 569-582

[2] Not my phrase, Murakami’s on the subject on nationalism http://www.guardian.co.uk/world/2012/oct/01/haruki-murakami-hysteria-islands-row

[3] Not my own phrase, if you use a search engine, you’ll find many instances.

Links on Becky Adams and Para-doxies

About Becky Adams and Para-doxies

I was writing my first two blog posts, I read quite a few articles on Becky Adams and Para-doxies.  I dare say I shall write it about again, but thought I would share the research links.

In The Mirror

http://www.mirror.co.uk/news/uk-news/former-madam-becky-adams-plans-1522073

The Sun

http://www.thesun.co.uk/sol/homepage/features/4729133/Ex-Madam-to-launch-UKs-first-ever-disabled-brothel.html

The Huffington Post

http://www.huffingtonpost.com/2013/01/07/brothel-disabled-disabilities-madam-becky-adams_n_2424721.html

Daily Mail

http://www.dailymail.co.uk/femail/article-2260701/Madam-Becky-Buckinghamshire-open-British-brothel-mental-physical-disabilities-including-boys-autism-injured-soldiers.html

Para-doxies website

http://www.para-doxies.co.uk/

Becky Adam’s book ‘Madam’:

On Kindle:

http://www.amazon.co.uk/Madam-Prostitutes-Punters-Puppets-ebook/dp/B007BDLHG0/ref=kinw_dp_ke

On Kobo:

http://www.kobobooks.com/ebook/Madam-Prostitutes-Punters-and-Puppets/book-G4w-UWXBMk2H8CezVZF5OA/page1.html?s=5UYigXUks06gpW6LInXnUA&r=1

On Paperback: http://www.amazon.co.uk/gp/product/0957148909/ref=s9_simh_gw_p14_d2_i1?pf_rd_m=A3P5ROKL5A1OLE&pf_rd_s=center-2&pf_rd_r=1C09CMWSZCSV2NSWT0HZ&pf_rd_t=101&pf_rd_p=358549767&pf_rd_i=468294

Becky Adam’s own website:

http://www.madambeckyadams.co.uk/

Editorials on Para-doxies and non-print media appearances:

Sarah Ismail in The Independent http://www.independent.co.uk/voices/comment/brothels-for-disabled-people-guess-what-we-like-sex-too-8461537.html

Recent appearance on ‘This Morning’ www.itv.com/thismorning/life/brothels-for-disabled-people/

The ITV Player is UK only, but if your’re outside the UK you can watch here:

http://www.youtube.com/watch?v=BJZGyMWThtY

Recent appearance on ‘The Alan Titchmarsh Show’

http://www.youtube.com/watch?v=3enF_QfR_EY

Internet ‘WebTalkRadio’

http://webtalkradio.net/internet-talk-radio/2013/02/11/a-new-spin-on-autism-answers-sex-is-it-an-option-for-the-low-or-no-functioning-adult/

& The Jeremy Vine show on Radio: http://www.bbc.co.uk/news/uk-21063301

American Broadcast Corporation

http://abcnews.go.com/Health/uk-madam-plans-brothel-people-disabilities/story?id=18175460