We are very happy bunnies in our new office. Thursdays are a hive of activity, with Shital, Alan, Janet, Sue and Neil piling in to answer letters, phone calls and keep everything up and running.
A Big Thanks to Ted who has answered our phone on Thursdays for many years,
and has decided to have a break.
Everyone who has spoken to him, appreciated his thoughtfulness, help as well
as his sense of humour. Ted, we wish you well.
Thanks too, go to Malcolm Matthews who copies our tapes for us.
It is also time to welcome Shital officially as our new membership secretary. Janet has been doing the job for over a year, doing it very well too, if reluctantly. We are working hard to get funding to pay Shital, so that she can afford to give us her time. Shital will also be running some therapy sessions in due course, more news later on. Tuppy applied to the National Lotteries Awards for All and was successful! We got a cheque for £4,979.
The other bit of news is that SPOD
has finally closed down and is donating
its assets to Outsiders. This means a fabulous photocopier for starters (the
small one now being used in the Trust office). Simon Parritt,
SPOD's director
will continue to offer counselling. Outsiders plans to take over
SPOD's
info line and training, perhaps using Simon's expertise.
Outsiders is also planning a new leaflet to be sent to school leavers, and other projects to publicise disabled people as desirable.
All this will make Outsiders bigger and stronger. We are busy learning all about strategic planning, good pratice and campaigning. Voluntary groups thrive on campaigning, and we hope to include as many members as possible in these projects. Your ideas and views are welcome.
A big thank you to Tulloch, who found us our fund-raiser, Melissa, and is helping us get it right.
With the threat of SARS
spreading through the UK, I realise how much I treasure my friends in Outsiders.
I think how many have small and weak lungs, and might
easily peg it if they caught SARS.
Do look after yourselves. Remember: fruit five times a day, plenty of exercise
and late nights.
While we are on the subject of pegging it, I was at a meeting of the British Deer Society last weekend (see photo) and was given their leaflet on legacies. If people will leave money in their wills to the BDS, perhaps they might leave money to Outsiders! Then we wouldn't have to worry about money any more. If you haven't made a will yet, you could bear us in mind! My legal advisor insists I spell it out because just getting our name a bit wrong can make the legacy void.
We are:
The Outsiders Trust,
Charity number 283350,
BCM Box Lovely,
London WC1N 3XX.
Ta.
I am delighted with Alan Taylor. First he mends our computer so that it prints out the membership list in an orderly fashion. Then he offers to take over our website, making it ship-shape. The site's new feature is "Success of the Month" documenting successes, large and small from you, our members. You can use your real name or be anonymous.
If you have achieved something, like daring to ask someone out, having a date, or even starting a relationship, write two paragraphs: one on on what you felt like before, and the other what you feel like now. Please email them to Alan on kane77@ntlworld.com or post off to us.
Outsiders is going through another gender crisis. Last week, we welcomed twelve
new male members and only one female. Please help! Think of a female friend
you know who would like new friends or a partner, and send her along to us.
Now!
Frolicking Fun to You All
Tuppy
It was about a year and a half ago that I met my girlfriend, Edna. I was going to visit a disabled friend I'd met on holiday, who lived in a home in Farnham, Surrey. Edna was on the same bus, also going to the same place as I was, to see a friend. We got chatting and found that we had a lot in common. Then, one evening, a friend brought her round to see me, and we gradually went to visit each other once a week. When we were able to get transport, we saw each other very regularly. It was a dream come true. We had both been trying to find someone for a very long time. Indeed, many years ago, she met me at Brent Cross Shopping Centre, but someone told her that I was married, so she didn't try to contact me. She never found out that I was separated from my wife about twelve years ago. Edna had a boyfriend before, but she lived in a home for disabled people and they didn't agree with her and her boyfriend meeting up in the home. She was under a lot of pressure, so she had to call it off.
Edna is a wonderful person. We both have got our own flats and have power-driven wheelchairs, so we can go out together. We both have a sense of humour and are very affectionate. Sometimes I can't believe it - we're so happy when we are together, but I will always be grateful for all the help Outsiders Club has given me. It is difficult to get to lunches, as Edna is unable to get into a car but, one day, if we can get special transport, I will come and see all my friends again. God bless to you all and best wishes.
They met last year at the AGM of 'Breathe Easy', which is the social branch of the British Lung Foundation. Maz, who is Outsiders Club Treasurer and organises the East Anglian lunches, arranged a further meeting with Claire, editor of the Breathe Easy newsletter, to discuss the two groups, and they have been together ever since.
Dear All,
I think I am right in believing that Outsiders is approaching its quarter century of existence. This, I feel, is a magnificent achievement for the group, and all the people who have organised and funded it, and who continue to work very hard to maintain its existence.
Now that this milestone has been reached, I wonder if it might be an opportune moment to reflect, and think about how we are going to move forward into the next twenty-five years. I think nearly everybody would agree that we need to maintain and increase the membership - more members means more funds, more chances of social interaction, and the possibility of relationships for more people.
My personal opinion, (probably slightly controversial, but I have found, after speaking to lots of people at the London and East Anglian meets, almost totally agreed with, it seems), is that we should drop the sex!
When I joined Outsiders, it was advertised, in the magazine of another support group, as a club for people with socialising difficulties, for whatever reason, and that is how I believe it should be promoted. I would not have joined if it had been advertised as 'sex for the disabled'. It seems bizarre to me that the club, which wants to recruit more shy, nervous members with socialising difficulties, especially females, seems to have this obsession with sex, and promoting it.
I feel it is actively preventing hundreds of potential new members from joining, therefore depriving the club of much needed funds, and its existing members of potential partners.
I know that in the past 'sex and disability' was an almost taboo subject. But times have moved on, and I'm sure it's now not the big-deal that it once was, just as sexual orientation and a whole host of other issues are no longer things which are 'not talked about'.
In really crude statistical terms, I believe if the ultimate aim of the club is to get more people together having relationships, (and sex if desired), it is going to achieve that aim far more easily by dropping the promotion of sex.
I will now put on my tin hat, and retire to my bunker!!!
Comments on the above article are welcome - do write in and express your views. You may do so anonymously - as Robert's letter was. His letter and your responses will be discussed at our Coordinators and Trustees meetings and the outcome published in a future edition of INSIDE.
Llinks with Incontact Diverticular disease is a condition where pouches in the bowel become inflamed. The Association provided support and advice for its 800 members and this service will continue with Incontact, the organisation for people with bowel or bladder problems. www.incontact.org or 0870 770 3246.
Support group for people with these conditions and raising awareness, because the conditions are often not diagnosed. Raynaud's affects the blood vessels of the extremities so that fingers, toes, ears become blue and numb. Scleroderma affects the connective tissue and immune system, making the skin tight and shiny, with other complications. 0800 917 2494.
This is an Australian group for couples and select singles who are currently into the swinger lifestyle or are seriously thinking about it. It is a forum for discussion only, no spam, no lurkers, or devotees. http://groups.yahoo.com/group/swingers_with_physical_challenges
A club for drivers who want to liaise with other drivers who they see out and about in their travels. You note down Mr or Miss Neat's number plate and send it to the company by text message, and if the other driver is registered, the two of you get put in touch either by phone or email. Registration fee is £5.75.
If you go to the website www.goofyfootpress.com on google, you will discover two American websites which offer two wonderful international resource lists. One is called RESOURCES for the Horny and disabled and the other is Sexuality and Disability Webliography. We have emailed them to ask to be included - how they managed to omit Outsiders seeings we have been going for 24 years, is quite a mystery, especially as they have listed SPOD.
This is an alternative therapy, which takes you by light hypnosis into what feels like a past life. Benefits can include the pleasure of the trip, healing the body through the mind, helping problems such as Obesity and drug abuse, creating a more loving relationship and bringing comfort to the grieving. Finding your local therapist can be a problem, as there is no national body of past life therapists. Try asking at any alternative therapy centre and if you keep asking around, someone will point you in the right direction.
One soggy blowing Wednesday a few months ago, I was to be seen trudging along
the humming roads of Brighton, towards Radio 4's local studios.
For those not familiar with Radio 4, they have a certain programme called "Home Truths" presented by the inimitable John Peel, which goes out every Saturday morning at 9, repeated on Monday evenings. This programme is basically about all things Famille, involving as it does, stories galore about siblings, marriage, lack of marriage, adoption, family pets, death and health, to name but a few subjects that come under this broad umbrella that is family life.
The subject of health had been the one that finally goaded me into picking up the telephone and putting my penniworth in.
I had been itching ('scuse the pun) to contribute for ages, on all range of subjects from locking up bunny rabbits - I have a house rabbit - to finding your family tree, but the one that got me was the subject of wigs. Yes, wigs. Always a subject of fun and innuendo since probably before Charles Dickens day. Anyone who remembers George and Mildred on telly won't be surprised when I say they had one on there as well! I have been a wig wearer, and I promptly rang up and said so. "Come in and tell us about it" they said. So I went off.
To fill you in, I was born with the rare condition of Nethertons Syndrome.
This
is a skin disease which shows itself about three days after birth. Until the
1960's babies with the condition did not survive, so the rare condition became
even rarer. Because of this, I was misdiagnosed until the ripe old age of 34,
when it was finally picked up by the characteristic shapes of the shafts of
hair on my head. This test had been done years before, but they must have selected
the wrong bit of hair. Yes, folks, I did have some hair but not a lot.
I wore a wig from the age of five until I was finally coaxed out from underneath it by my current long suffering boyfriend. It felt strange at first and very cold but, oh boy, what freedom!
Not wearing a wig freed me of other hassles. The odd comment. The "playful"
experimental tug at a pub or nightclub. The second glance that wasn't
complimentary, etc, etc. People have false legs - indeed I went out with someone
for nine months who had one, and nobody made fun of him. But for some reason,
false hair is fair game. I suppose I can see why - for many people it is vanity,
a covering up of the inevitable onset of Anno Domini. But for some of us, it
is much, much more, and should be respected as such.
So, after all the teasing, it was great to be taken seriously by the great John Peel, his huge audience listening in. I had been on the radio before, and enjoyed it. John was not with me in person but our conversation was held by remote control, me alone in a tiny studio in Brighton and him somewhere else.
He was easy to talk to and I was relaxed. I joked about being blond for fun and red-headed to be gorgeous, and that I now I have ditched the wigs, I look like a hedgehog. I told him how all the teasing made me build up a bit of a brick wall, which made relationships difficult. Everything went fine until John questioned why I might have found it difficult to have boyfriends when I was at school. I told him not to be silly (and I later discovered that this section was cut out). John continued to probe me with questions. Then, before I knew it, the interview was over and I realised I was locked inside the studio and forgotten. I banged and shouted and eventually someone came to let me out.
I have since listened to the interview - everyone says I was great, but I have
to say, I still don't like the sound of my own voice. I was not at all
surprised that all the other contributors to the wig discussion were men. No
women other than me rang in. The old cliché a woman's hair is her
crowning glory is a true one. You are nothing without your hair, unless that
is you happen to look like Sinead O'Connor who shaved hers off and still
looked stunning.
If a woman has little hair due to an accident or illness, she is bound to want to cover it up. Why is this so funny to some? If only people knew the pain that those jokes can cause, I am sure they wouldn't do it, or knowing human nature, perhaps they would!
Anyway, as I said, I no longer wear a wig, but I do tend to go around in big floppy romantic hats to hide the bald patches. Otherwise, I don't get so much male attention, am called sonny, and get glared at in ladies lavatories. But at least I am ME! What you see is what you get. Almost. Those who really know me, know different.
Sheila Dray was Outsiders Membership Secretary during 1994 and 1995. She lives with her dogs and rabbit in East Sussex. She hopes to contribute to Outsiders more once she's moved into her boyfriend's farmhouse, when his eco-extension is finally completed.
First of all, thank you to all those who joined in: a total of 13 people, including myself. The theme was based on what goes on for us when it comes to approaching people, what hinders us, personal solutions, and what would help make it easier.
It turned out that fear, in some form or another, was responsible for holding people back. During the workshop, we soon discovered that we had all shared this feeling at some point, and yet had found ways of overcoming our anxieties. Here are some of the tried and tested methods that participants shared.
We also discussed what we needed from others in order to shake off anxieties in public. We came to the conclusion that we can't always rely on others to give us what we need. However, if we all gave ourselves what we need, eventually we may be able to give the same to others.
If YOU want … respect, non-judgement, equality, trust, honesty, positivity, etc… start giving it to yourself first!
REMEMBER WHATEVER YOU DO OR DON'T DO, MAKE SURE YOUR ARE HAVING FUN BECAUSE LIFE IS TOO SHORT NOT TO!
Janet thought we should discuss how to make ourselves more attractive, and this proved to be a jolly good idea. Read on to see just how attractive we became!
We started with 13 participants but lost three who had to go early. Everyone at the end completed their evaluation form.
First we went round the group defining what we find attractive. Funnily enough, looks were not top of the list. Participants thought that beautiful people tend not to be very nice. We felt that confidence, voice and tone of voice, feeling comfortable, enthusiasm, sensitivity brought on by confidence, eye contact and attentiveness and gestures were far more important.
The flutter of an eye even a squint can be sexy and adds character to a face, clothes, especially if they are unusual. Some people said the smile on the face works for them, and one person said that he feels more attractive when he has put on fresh white underwear. People thought dressing well makes you feel more attractive.
Then we spent time focusing on each participant, telling them what was attractive about them. If you feel tempted by these descriptions, please write in and we will forward your letter on! We started with Janet.
By this stage, I had been moving my hands in circles coaxing them all to come out with the only thing I wanted to hear. Don't we all just want to be told is that we are gorgeous? Sod the intelligence, good sense of humour and nice personality!
Remember this when conversing with potential partner. "You have nice hands and a pleasant manner" comes over as "you are ugly but have nice hands and a pleasant manner" Never be mean with words. Remember Cicero, "There are two kinds of beauty - loveliness and dignity". If you fancy someone, tell them they are beautiful, gorgeous and lovely!
Workshops have become so full that some participants have not been able to discuss what they would like to at any great length. We have decided to hold them a little earlier and in smaller groups. Each topic will be covered two months in a row to enable different people to take part. Ideas welcome!
I hate being single and don't want to be on my own any more. All of my brothers and sisters are alone - either never married or divorced. Our parents say that this is because we are disabled, but I have other disabled friends who are married. What is wrong with us?
Solo
Learning about making and keeping friends comes, to some extent, from your parents. Their own friendships can provide examples for us. If parents don't have many friends, or hardly ever socialised (perhaps because they had their hands full bringing up disabled children?) then the children don't get the opportunity to see how friendships work. Without these basic skills, you probably feel shy and nervous in company, and this in itself will make you come over badly. So, you need to work hard to overcome all these difficulties. Join some clubs where you are forced to mix with others - anything which involves your hobbies. Never forget that lots of other people share your difficulties, so try to consider this when you meet them, by being friendly and helpful. Try to engage in eye contact, and smile. Give yourself credit for every step you make. You won't necessarily make friends straight away but you can form relationships gradually through mutual interests. You may find yourself having less and less in common with your family, as you grow into YOU, ready to find your partner.
I find making conversation with strangers totally impossible. Whenever I try, there is the inevitable long silence, and I just dash off, feeling angry and embarrassed. I am totally hopeless. How will I ever find a partner?
Tongue Tied
Better tell the person how difficult you find it to speak to strangers and try to make a joke about it. Then be guided by them. If they ask how you are, or where you come from, follow their example. Listen to what they say, and ask about things which you don't know about. Show enthusiasm for what they tell you. Perhaps a holiday abroad would help you - in Ireland and France people are much less reserved, make eye contact and speak to strangers all the time. This habit could rub off on you. Finally, silences need not be embarrassing. They can be moving and meaningful. Being alone with someone in silence can mean that you feel so comfortable with them that there is no need for words.
I recently joined Outsiders on the advice of my daughter, as she knows how much I would like to find a gentleman companion. My problem is that quite honestly, I have no energy left in me to make the effort. I look after my grandchildren most days, and help my daughter with her housework. Dealing with nappies and vacuum cleaners doesn't leave me feeling very attractive, more worn out! What would you advise?
Haggard
My guess is that your daughter wants you to find a partner, so she gains another slave. Put your foot down. However much you love your grandchildren, get their mother to take responsibility for her family and employ a childminder and cleaner. You've already brought up one family and it's time to relax and get pampered. Find a man who is devoted to you, so you can enjoy life!
I find socialising very difficult because I am allergic to smoke. I can't go to pubs, parties or night clubs, and this means that I can rarely go out with my friends. I feel I will never find a partner and I shall die alone.
Smoke-Free
I am sure your friends wouldn't mind going to smoke-free places sometimes - have you ever asked them? Plus things are really looking up if the ban on smoking in public places takes effect in England. In the meantime, there are pubs with gardens, no-smoking restaurants and many places have a no-smoking area. If there is a particular gig you want to go to, phone up the venue and ask them to designate a no-smoking area. Ask friends who throw parties to set aside a no-smoking room. I guess you need a bit of confidence to start doing this, so get a friend to help you. Once you have enjoyed a few successes, you will find it easier. Remember that most people find their partners at work or at the gym, not at clubs or in bars.
I am a deaf person. Since I broke up with my partner, I often get suicidal, but have nobody to comfort me. I cannot call the Samaritans because I cannot use the phone, and you can hardly talk about killing yourself through a translator or facilitator. Writing letters is too long winded. I sometimes drag myself and go down the pub but people don't want to hear tales of woe, and I just get drunk and feel worse. Do you have any advice?
Heartbroken
I don't know if you have a computer and e-mail but, if so, you can contact the Samaritans by email. The address is jo@samaritans.org. I would visit your GP and tell him your predicament. It might be a good idea to go for counselling until you get over your ex-partner. Your GP could arrange this. He might also suggest antidepressants or whatever to help you along.
Since I started using a wheelchair I have put on loads of weight and I guess this is because I am not getting enough exercise. I feel very unattractive as a result and I am very sensitive to jokes about fat people. I feel unhealthy and depressed. This makes me eat more biscuits and drink more wine, and I don't know when it will ever stop. Please help me.
Podge
Find the right type of exercise to enjoy losing weight. You may need specialist advice, depending on your disability, so seek it. Invest some time working your way though the "Sports and Leisur" listings in the back of Practical Suggestions (or go to the Sport and Leisure section in the directory), to find out what is available. You don't need to go to a gym or get involved in sports, there is also dancing, martial arts and Yoga to choose from. If there are no classes for disabled people locally, try to see what you get out of other classes. You don't need to legs to dance! What you do need is stamina, to be able to get slightly out of breath for an hour a day for five days a week. Once you start to loose weight, you will cheer up, cut down on the biscuits and wine. Then, when you find a partner and start having fun, just imagine how slim you will become!
Laura, a dear friend, died suddenly last December, aged 35, after a short illness,
I had known her since Oct 2001, as a transatlantic pen friend. She was born
in Cordoba, Argentina and moved to Buenos Aires in her teens to study at the
University. She lived with her parents and had a sister, and a brother who now
lives in Spain. One of her dreams in the last couple of years was to visit her
brother but with the chronic financial situation of her country, sadly, this
was not possible.
Despite being in a wheelchair since birth, and with many physical problems,
Laura led a very active life. She trained as a pharmacist & biochemist,
and did an auditing job in that field for the government. Most of her salary went to pay for her
PAs, I once asked why bother
to work? She replied quite simply 'I would get bored, and what else would I do?'
Laura spoke many languages and was always taking another course to improve her skills. She was also an accomplished artist, and sent me a painting just before she died, a permanent reminder of a dear and talented friend.
Another dream that Laura had was to start an Outsiders group in Argentina. She spent a lot of time publicising the idea in the media, with some success. Hopefully the inspiration will carry on, with a group formed in her name.
Laura was a special 'Angel' who will be greatly missed by all of those who
were lucky enough to know her. For me, she was a great inspiration to what can
be achieved if you have the willpower and vision. I was greatly honoured to
be one of her close friends, despite never having met face to face.
The best way to celebrate would be for all members to find a partner (or whatever you are looking for).
And let's party! Let us know what you would most enjoy. It will take time to plan, so get your thinking caps on, and we will make it happen!
Our 20th Anniversary was celebrated with a press reception at Babouska on a Friday afternoon till early evening. No press came but we had fun and it was lovely to see so many old faces.
We held a Sensuality Day in June at Kew Gardens. We gathered in an area devoted to the senses, with aromatic plants and waterfalls. We held a sensory fashion show, fed each other tasty morsels, enjoyed sunshine, massage and a display of belly dancing. The event was filmed by a Canadian TV station. You can see photos of the event on our website www.outsiders.org.uk.
Let's do something wonderful next year - something new and interesting, to provoke the imagination of the public and provide us with wonderful memories of being together.
One idea would be to launch a campaign entitled Disabled People Are Desirable - send us your views!
For attractive lips, speak words of kindness
For lovely eyes, seek out the good in people
For a slim figure, share your food with the hungry
For beautiful hair, let a child run his/her fingers through it once a day
For poise, walk with the knowledge that you never walk alone
People, even more than things
have to be restored, renewed, revived, reclaimed
and redeemed; never throw out anyone
Remember, if you ever need a helping hand,
you will find one at the end of each of your arms
As you grow older, you will discover that you have two hands:
one for helping yourself,
and the other for helping others.
INSIDE
is edited by Tuppy Owens. It is published several times a year by:
The Outsiders Trust,
BCM Box Lovely,
London WC1N 3XX.
Email: outsiders@clara.co.uk