Susie Mallett

small66711@aol.com

Saturday, 11 May 2013

Taboo subjects

Italy, April 2013


Taboo subjects

Everyone is waiting on tenterhooks to discover the outcome of the anonymous sorting out of presentations for the World Congress. This is being done this week and we should all hear by 25th May whether or not our oral presentations and posters have been accepted. 

I remember only a few very good presentations from previous congresses that I have attended, and also a few really bad ones!
 
One of those that I remember as being really good and one that I have need to think about often when the subject crops up in my work was given by M. Sanna from Munich, who spoke about sexually and disability in a presentation titled – Jugendliche mit ZP und ihr Umgang mit Sexualität, Young people with CP and their approach to sexuality.     

I very much hope that will be something along these lines offered this year in Munich.

If not then there is always this television programme to refer to that was recently shown on Channel Four in England –



Earlier thoughts on this subject

I have written about this taboo subject before in the past –





Appendix –

Sunday, 11 January 2009

"Partners" by Susie Mallett July 2005

 

Sex on the menu

Don’t be shocked or disappointed at the title of this posting. It is only the name given to one of the many breakfasts on offer on the menu at what is becoming my “local”, the Café Fatal.

I was recently asked why I always go to this particular café when I now live in the city and the world could be my oyster. My answer is that it is almost like an extension to my living room, at just 188 paces away (see my blog 26th December 2008) on the corner of the next street. I counted the paces again tonight as I was quite sure that there would be more. The temperature is down to as much as twenty below zero at night and the few hours of sunshine during the day are not enough for the weak rays to have any affect on the compacted snow and ice. My footsteps were therefore somewhat tentative and, I assumed, shorter than usual as I avoided slipping over. I was sure that I would take more steps but I was wrong, 188 it remains.

Another advantage of this extension to my flat is that the nearness makes it unnecessary to don the many layers of clothes that I would need to venture further afield, to another very nice café at least ten minutes’ walk away. The route to the Café Fatal is not long enough to get cold but just far enough to feel the tingliness of the bitter night air on my face. It is near enough that at nine in the evening I can decide to grab just my long winter coat and scarf and go for a drink or even a meal and see a bit of the world.

New bits in between

It is a entirely new experience for me to go out alone to a café or a restaurant to eat a meal. During my days in Budapest I got quite used to café life, to sitting on the street with a newspaper or a sketch-book, with a coffee or a hot chocolate, but to go to a restaurant to eat, even with company, has never been one of my favourite “bits in between”. Since living in the city this has changed and I gave it a go for the third time this evening.

There is always a real mixture of characters in the restaurant, which I really enjoy as it means that I have some interesting faces to draw. There are young, old and middle-aged, and I suppose that last one is the group to which I now belong! There are groups of friends, there are couples and there are several people like me, alone with a glass of wine and a book. This evening I had actually got Barnklau’s Unfug on the table beside my notes and sketch-book and I was about to search for some more interesting snippets for “Conductive Upbringing Part Two” but, as often happens, my attention was caught by something else, this time the menu.

There is more to life than marmite on toast!

“Sex and the City” caught my eye about half way down the list of breakfasts, which also included, Tatort (scene of the crime), Golden Girls, Our Little Farmyard, Verliebt in Berlin (In love in Berlin) and Lindenstrasse (the German equivalent of the English soap Coronation Street).

All of these breakfasts combined meats, cheeses, eggs, juices, fresh fruits and bread rolls, teas and coffees, to suit the given name.

The cheapest, at 3.50 euros and by far the least healthy was “Scene of the Crime”, offering an expresso, with a dash of schnapps, and a cigarette that one now has to go outside to smoke!

For such a small café the menu has a wide choice of dishes and I ordered Winterlichen Blattsalate mit geb. Camenbert und Preiselbieren (winter leaf salad with baked Camenbert and cranberries) from the Wochenkarte (menu for the week).

One of my favourites, Käsespätzle, a Bavarian dish of a special egg noodles baked with a covering of two different sorts of strong mountain cheese, was also on the menu, plus more comfort food of pancakes with fromage frais, sultanas and ice cream.

Searching the menu again for the coffees, I found some much more interesting drinks on offer, such as hot white chocolate with slices of orange and a nip of espresso, Assam special with rum, and again for comfort, hot milk with honey.

I just about managed a cheese cake and coffee for “afters” while enjoying the music and general atmosphere. Sometimes the music can be loud and slightly overpowering, more often it is discrete. It is nearly always unusual and this evening it was French and jazzy.

As well as packing in all the activity described above I also read a couple of chapters of Unfug, sketched several faces from the crowd room and wrote this. Not bad for two hours of bits in between, more than I had managed all day!

Sex and Conductive Education

Now this title may surprise or shock the reader as it isn’t something from the menu at the Cafè Fatal, it is a bit more serious than that. Writing about the café and its menu did set my mind off and I got to thinking about something which has been a recurring theme over the years. This is a subject that is rarely broached, although it comes up regularly in my work: sexuality and disability, sexuality and conductive pedagogy/upbringing.

It is there and I deal with it.

It starts with the giggling girls in my teenage group who get their ten minutes to discuss boys before the programme begins. It continues in the holiday groups where we make time for lunchtime discussions. Themes chosen have included “My mum and dad fight and fall out because of me”, “Why can’t I find a non-disabled boy/girlfriend?” and “What will a partner think of my dis-formed figure?”

We discuss sexuality as openly as we can and we actually encourage the discussions, we try to plan time for them in our programmes.

In my evening group for young adults such themes are also discussed although young adults with cerebral palsy are not prepared to discuss sexuality quite as openly as the teenagers. They do, though, mention their concerns about their relationships with the opposite sex and talk about their wishes of finding a partner at some time in their lives.

I also have adult groups for people with multiple sclerosis and stroke, who certainly have concerns about their sexuality too. Who do they speak to, it very rarely comes up in our groups. It seems to have become a taboo subject.

I have been working as a conductor for over fifteen years now and with disabled people for twenty-five. I have clients who I have known since their childhood and it is with these, now young adults, that the most open discussion takes place. Sometimes I am bombarded with questions about their bodies and body-image, relating to their sexuality, and I sometimes do art projects drawing around their bodies and painting and decorating them, making them beautiful.

They ask me how can they be attractive despite their deformities or strange movements, there are even questions about communicating with the opposite sex when they have a disability which also affects their ability to speak clearly. Often I have parents contacting me for literature to help them deal with problems arising with their adolescent children and their new found sexuality.

All of this is important and must be dealt with within my work but this touches just the tip of the problem as many people do not have anyone to talk to.

Most of them, I have known for many years and it still isn’t easy for these young adults to broach the subject of their sexuality with me, although I suspect it is easier than speaking openly with their parents or peers. Fortunately, when they do pluck up the courage or are encouraged to join in discussion I am prepared to listen, we can be open with each other and do a bit of problem-solving together.

Sex and training

I am however prepared for this only because of my twenty-five years of experience and not because of my training as a conductor at the Petö Institute.

Does any other conductor who trained at the Petö Institute remember sexuality and disability being covered in their lectures? It certainly didn’t get mentioned in my own training days. We were taught that we were working in “a holistic manner”, “treating the person as a whole”, but this part of the whole person, developing sexuality, never once got mentioned in my training. I have learnt to deal with these situations as they arise, sometimes adequately, sometimes I fear not offering enough. I work together with parents when necessary, finding other professionals to step in when we feel that we need more help and advice.

What about you conductors who trained at NICE, or the conductor/teachers who trained in the USA? Was this a subject covered in your training?

If it was it would be interesting to know to what depth and who taught it.

In my own twenty-five years working with disabled teenagers and adults it was only last year that for the first time I heard someone at a Conductive Education conference openly discussing the issues of sexuality and people with physical disabilities. This was at the congress in Munich and it was the only presentation that I heard there that I often call to mind to help me in my work.

After this congress I asked a director of a fairly big German organisation working with people with disabilities what kind of provision there is for the adults living in its sheltered housing and care centres for discussing their sexuality and/or receive advice and counselling. She was unsure of the answer but she was pretty certain there is none.

Who then do people turn to?

And who or where can we as conductors turn to in order to educate ourselves to deal with the problems that are bound to arise, more adequately and with more confidence?

Sex and Petö

I don’t think that there is anything on sexuality in the Unfug but when I was in the Mária Hári Memorial Library last year I read a play that he had written in German, set in a suburban brothel. I do not think that András Petö was coy about sex!

Also last year in Budapest I met a lovely old Hungarian lady, now more than 80 years, who has cerebral palsy and was treated by András Petö when she was young. She told me the following little story.

She told me about asking Petö how she could enjoy love-making with her new boyfriend. András Petö went to the conductor leading the "workers’ evening group" and told her to insert certain tasks for relaxing the hips into the lying programme for the next three months. This was done and Bob’s your uncle, the nene (auntie) said, she was soon having as much fun as I do!

I don’t think that anything of András Petö’s was ever thrown away and so this programme is probably still there in the Library collection. András Petö is not the only one who can write a programme and since I was told this story I have discretely put a few tasks into my evening group's programme what I hope may be of help to at least some of them.

Have any of you other conductors working with adults got anything to share on this often taboo subject?

Notes

Bärnklau’s Unfug – Unfug der Krankheit – Triumph der Heilkunst Dr. med. Karl Otto Bärnklau, Verlag- Karl Schustek, Hanau/Main, 1965

my blog 26th December,2008-

“bits in between”

Petö Institute -
http://www.peto.hu/

NICE – National Institute for Conductive Education

Congress - Konduktivee Förderung baut Brücken, Okt.24-25, 2008, Jugenliche mit ZP und ihr Umgang mit Sexualität, M Sanna, Munchen.



5 comments:

NormanP said...
Once, with my brother-in-law, together accompanying my then young daughter to the Institute in Buadpest, we took time to visit two exhibitions: the first was a Holocaust exhibition, which involved the necessity of stepping up into, standing inside and passing through one of the rail wagons used to transport Budapest Jews to the concentration camps. The second was an exhibition of John Lennon's artworks, including his erotic drawings.

Walking from the first straight into the second, we were, at first, shocked. What sort of people were we who could shift so easily, from such horror?

The answer of course was that Lennon's drawings were an antidote, an affirmation of our humanity, an expression of our common sensitivity.

Thanks for sharing your drawing; for its delightful 'shock' before breakfast on a Monday morning when I was just dully checking out emails and blog postings while waiting for my daughter's carers.

Interesting article. Interesting that, even though Conductive Education is apparently holistic, sexuality is obviously omitted. I'm not surprised though. Have you heard the phrase "No sex, please. We're disabled"? That message runs all through society. It is a tough one to drown out, trust me.

It is definitely a message that needs to be rewritten, which is obviously a tough task when educators and other professionals still aren't receiving the training. However, perhaps sexuality is best not left to the professionals. Perhaps talking with other adults with disabilities could be as informative.

Laszlo said...
Dear Susie,

I miss Germany so much! As I read your sex thing, I felt for a little while back. The names of the food make me hungry, the names of the drinks familiar to my ears and I just miss that atmosphare. I also felt the ice-cold air on my face when you mentioned the 188 steps. Kasespetzle was and is one of my favorit dishis. Why noone would like to concume things like those here in England?

Kasey said...
Susie,

This is one of the most interesting topics (but least talked about) as adolescents are my favorite age group to work with. During my training, we only received one short lecture on the topic, unfortunately.

Susie Mallett said...
Norman- I am so happy you found the "shock" delightful. I must admit I was a little bit worried about reactions as I pressed the "publish blog" button, as much about the picture as about the contents of the blog!

Glenda- I would be interested in discusing this subject with you further. You suggest that perhaps talking to other adults with disabilities is as good a way as any to inform each other, I believe you could be right but,I wonder if all adults with disabilities actually come into contact with enough people with experience to gather the information they need.

Laci-I ate Käsespätzle in the same café this evening, it was delicious.

You work a lot with adults I know, how about sharing some of your experiences of how you deal with questions on sexuality and disability?

Kasey - at least this subject was not completely ignored on your course. Can you tell us a bit more about how it was covered.
Who taught it to you?
Did you discuss just the problems or how to help solve them as well.

Did you cover sexuality with teenagers or with adults or both?

Kasey, you did tell me you didn't mind lots of questions!

Thanks to you all for reading and commenting.

Susie

4 comments:

  1. Roland Lefèvre has posted the following link as a Comment on my Faceboook page in which I posted a reference to this posting of yours:

    I am transferring it herewith to your own Comments where it more properly belongs.

    It comprises a link to a French-language video with analogous content to the one that you have so rightly drawn attention to. A summary of this video, in English translation, reads as follows –

    LOVE WITHOUT LIMIT

    Summary

    Cedric, Patricia, Frank and Marie-Christine are people with disabilities, who open the doors of their privacy.

    How to seduce? How to have sex? How to break down the boundaries of one's body? This presentation focuses on the issue of sexuality of the disabled, who are subject to a double penalty: Being cut off from their bodies and from their desire.

    Despite the efforts of medical teams, there are no institutions in France enabling people with disabilities to flourish sexually, while this issue has entered into the customs of Switzerland, the Netherlands and Germany.

    http://www.afmproductions.fr/nos-films/Citoyennete/L-Amour-sans-limite-pas-libre-de


    I am sure that there will be many other such materials available on line in a variety of languages suitable for both general awareness and to incorporate into training courses.

    ***

    I think that I recall seeing sexuality as a possible topic at the 8th World congress and look forward to a 'conductive' slant on this.

    ReplyDelete
  2. On Conductive World's Facebook page I am also publishing a note to its readers, on a frequent source of irritation to me pointing out that they really ought to post such comments with a little more sensitivity for what precisely they are commenting upon.

    If, for example, they are commenting upon what I have myself written about the contents of a link, then they may reasonable click 'Like it' there on the Facebook page. The same goes if posting a written comment made on what I have Facebooked.

    If, however, they are commenting upon the actual content of a blog linked to, then the right and proper place to do so is in the place provided for Comments on that blog itself. Among other things, this offers simple courtesy and feedback to the author.

    I wish that I could feel confident that my doing this will have any effect!

    ReplyDelete
  3. Thank you Andrew.

    As I am not a regular user of Facebook I would not have caught up on the messages posted on your notice there for several days.

    Yes, you are right in thinking that it would be much apreciated were the comments to appear on the contents that they refer too.

    On the other hand it is nice to receive comments in any way at all rather than to see a "Like it" on your notice, without indication of what is actually liked.

    Susie

    ReplyDelete
  4. I see in today's Metro (free newspaper) that this year's Annual Erotic Awards in London are making a special point of recognising campaigners, academics and sex educators who are advancing the cause of sex and disability.

    ReplyDelete