Chapter thirty-five
PASTIMES
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Chapter thirty-fivePASTIMES |
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Note: This is the original text of the chapter in the 1992 book and it has not been updated. Page numbers refer to pages in the book.
Art
Reading for Pleasure
Writing for pleasure or profit
Family tree researching/genealogy
Crafts including sewing and knitting
Singing and Music
Photography
Penfriends
Citizens' Band Radio
Gardening
Sports and physical recreation
Swimming
Pétanque
Boating and sailing
Angling
Horse riding and horse driving
Cycling
Flying
The Duke of Edinburgh's Award Scheme
Competitions
Computers
Clubs
Women's clubs
I hope here to inspire you with tales of what other YPAs get up to, plus information on specialist groups, gadgets and mail-order sources, to spur you on to overcome any hurdles the arthritis puts in your way. Only enough room here to tickle your fancy, but no matter! As Pamela Waterhouse says "The biggest tip is to keep yourself busy – mentally and physically." An absorbing hobby will help keep your mind off pain and frustrations, give you a sense of achievement, put you in touch with new friends, and help keep the old by giving you something wonderfully non-arthritic to share with them. So – get cracking!
For other ideas, browse in a library, bookshop (including the children's section), hobby magazines and TV programmes (especially children's). For armchair browsing, try the Search Press's colourful mail-order catalogue of arts, crafts, cookery and organic gardening books. Readicut's crafts catalogue (page 283) includes books and Reader's Union even has a Craft Book Club. Short residential courses (on anything from singing or painting to obscure fungi) are a good way of meeting other people and indulging a hobby without long-term commitment or recurring transport problems – send for NIACE's Time to Learn (page 247). For heaps more ideas and addresses, you could try too the Disabled Living Foundation's low-cost leaflet on leisure activities, and maybe the Disability Arts Magazine. Look too at studying for pleasure in chapter 30.
Try saying 'I wonder how I could do x/y/z' rather than 'I don't think I can do x/y/z'. Find out how by consulting RADAR, DLF, SHAPE or Artsline, (both work for access to all aspects of the arts), by talking to other YPAs, or put your problem to a relevant 'non-disabled' organisation and ask if they can help; eg write for information about a residential painting weekend, and explain your accommodation needs. The reply might be a pleasant surprise saying they've a ground floor bedroom and shower. Or contact your local WI or photography club, say, and explain you're too shy to come along on your own – perhaps one or two members could visit you first so you'd know someone to go along with?
Even if you're not very disabled, just the right bit of equipment might make all the difference to keeping up or abandoning a favourite hobby. If you can't find one mentioned here, or commercially available, why not see if Technical Aids for Disabled People (formerly REMAP – page 146) might be able to make something?
Art
Did you know many of Auguste Renoir's masterpieces were painted when he had severe RA? When his hands got really bad he had to have the brush tied into his hand. Fortunately most of us can manage without having to go that far. Haydn Martin (who has RA) paints watercolours:
"I fortunately don't have any problems with holding my brushes. Now and again the tendons in my wrists seem to get crossed and make me jump a bit, but it's not too bad. I find it most absorbing and am hoping to hold a one man exhibition sometime in the future."
Art's an area where you really can forget can't dos and concentrate instead on can-dos. Very therapeutic. If you're the competitive type you can compete on equal terms with anyone else, like Sue Gunn (she has RA):
"I have been learning calligraphy for about 18 months and have entered an exhibition. No one in the exhibition knows that I have arthritis so I will be judged along with everyone else." (In Contact)
Sue now teaches calligraphy at evening classes, and has her own small business too.
Painting and drawing courses are a lovely way of getting out and meeting people. NIACE's Time to Learn (page 247) lists a variety (short residential), in really beautiful places, some of which I know are happy to cater for someone with special needs, if you write and explain. For information on other facilities around the country, see RADAR's Guide to Arts Centres and Creative Opportunities for Disabled People. The Search mail-order catalogue includes lots of low-price art books (eg watercolours, oils, calligraphy).
Reading for Pleasure
There are now more than a quarter of a million books in print! Make the most of your local library – if you're housebound ask about the visiting library service, which may be run by the local authority or the WRVS. If like me you can't easily get out to buy books in the shops, buy by post instead (see page 114).
Scan magazines and TV and radio programmes for news of new books and keep a note in your Infokit of any that take your fancy. Ask in your library to see The Bookseller new book lists; ask someone to pick up a copy for you of W H Smith's free Bookcase magazine; or think about subscribing to The Good Book Guide, a bi-monthly magazine of reviews with a bookpost service. I enjoy browsing through the publishers' catalogues which my wonderful paperback supplier (J Barnicoat – see page 115) sends back with my order.
Another armchair browser's guide is Waterstone's regular newsy Guide to Books: an Ordering Service for Readers. You get a year's account facility enabling you to order books from the guide by post or phone. You have to pay postal charges.
Book clubs abound, widely advertised in magazines and newspapers (eg ask Readers Union for their list). Some are general interest, others specialise in anything from military matters to romance. One drawback is that you usually have to agree to buy a specific number of books, to start with, anyway. That apart, their leaflets are usually inspirational, and they're a good source of presents.
Reading doesn't have to be a solitary occupation. Why not start a reading group, with, say, four or more members, meeting once a month in each other's homes to discuss a chosen 'book of the month'? It needn't be terribly intellectual, just people who want to do something easy but different, other mainly housebound people, maybe mums with young children?
For tips on overcoming physical difficulties in holding books, look back at page 149. Your OT can advise you on book rests or DIY solutions. Or plump for tapes and cassettes instead. Many libraries stock a good range. Travellers Tales specialise in lending out books on cassette by post and have a wide range, ideal for car, kitchen, or while you're languishing in bed. The service isn't specifically for disabled people, so not cheap, but worth finding out about nonetheless. ISIS also run a mail-order library of audio books, again with subscription and loan charges.
Cheaper, and sometimes free, are several specialist taped books (fiction and non-fiction) organisations, catering not only for blind people but also for people who can't hold books, provided you send a doctor's certificate describing the disability. Some, like the National Listening Library, hire out special tape/cassette players, manageable by people with arthritis. Other tape-lending charities are Calibre and the Muriel Braddick Foundation. DLF's Communication list gives details of these and others.
Ask DLF for information about special cassette players. Clarke & Smith Manufacturing Co Ltd, for instance, make the Easiplay Audio Cassette Player. Clever, though not cheap, it includes remote control on-off, automatic side change and light action controls.
Writing for pleasure or profit
Popular, despite dodgy hands. Two well-known authors, Rosemary Sutcliff and Marie Joseph, are fellow YPAs. Rosemary has juvenile chronic arthritis, and Marie RA, which developed in her 20s. More about them in chapter 29. Many others of us enjoy writing prose or poetry for pleasure, and dream of fame even if we never achieve it!
The Writers' and Artists' Yearbook (A & C Black), updated each year, is the key reference book to look at, packed with names and addresses of publishers, information about writing for radio and TV, literary prizes, copyright laws, desktop publishing, self-publishing, etc. (Also greeting card producers.) Don't, as they stress, be tempted by 'vanity publishers', who get you to foot the bill for publishing your work. It could turn out very expensive.
The inspirational monthly Writers' News, available on subscription, is packed with information, advice, and news of competitions and helpful publications.
Where else to get tips on how best to write? Widely advertised summer writing schools (some included in the NIACE's Time to Learn) and correspondence courses might help, but make sure you mean to complete the course before parting with any money. One way of meeting writers and learning from them is to join a local Writers' Circle. Ask your library for information or see Jill Dick's Directory of Writers' Circles.
There are various 'how to' books available, for instance Write a Successful Novel by F E Smith and M Sherrard-Smith (Escreet), author and former publishing editor Michael Legat's An Author's Guide to Publishing (Robert Hale) and Writing for Pleasure and Profit (Robert Hale), Jill Dick's Freelance Writing for Newspapers (A & C Black), John Braine's Writing a Novel, Patricia Highsmith's Plotting and Writing Suspense Fiction, or How to Publish Your Poetry by Peter Finch, himself a poet. Mary Wibberley's written a book on writing romantic novels To Writers With Love (Buchan and Enright). Mills and Boon will send guidance notes to would-be romantic novelists, along with a cassette And Then He Kissed Her…, (£7.50, 1991).
A booklet Writing for Radio is available free from Radio Drama, Broadcasting House, and Writing for the BBC by Norman Longmate (BBC Books) explains how to approach appropriate sections of the BBC. Rosemary Horstmann's Writing for Radio (A & C Black) or the Writers' and Artists' Yearbook will tell you more, too.
Word processing and desktop publishing make it much easier these days to publish your work yourself, though costs and quality vary tremendously. You'll need to do a lot of homework first before committing yourself. I've only a basic (but much loved) Amstrad 8512 PCW, not even IBM compatible, but was delighted to find two firms (Daisywheel and Inspiration) who could produce laser-printed, camera-ready copy direct from my disks, and by return of post. That did away with expensive typesetting costs, and the hassle of translating disks first into ASCII.
To find out more about desktop/self-publishing, look at Charlie Bell's low-cost The Writer's Guide to Self-Publishing (Dragonfly Press), Susan Quilliam and Ian Grove-Stephensen's Into Print (BBC Books), Peter Finch's How to Publish Yourself (Allison & Busby). Publish! An Author's Guide to Doing it Yourself Using Desktop Publishing, by Nicholas Saunders refers in particular to Neal's Yard in London, where you can do DIY typesetting and graphic design yourself, using all manner of hardware, including Apple Macs, and software including PageMaker, Illustrator 3, Quark Xpress, WordPerfect. Write too, to the Small Press Group.
Family tree researching/genealogy
I've been hooked for years! It's a fascinating detective story that can turn up all sorts of discoveries, about your family and social history in general. I learned several generations of one side of the family were mole-catchers, and even found the very plot of land where my great great great great molecatching grandfather lived. Even better, discovered distant cousins in America and Canada, who we never knew existed. One, in particular, in his 80s, writes wonderfully entertaining letters, and we hope to meet up very soon.
Start by collecting together everything you and other relatives know. Birth and marriage certificates from St Catherine's House, in London, will help take you further back (from General Register Office (Scotland) for Scotland). Two of the best sources of cheap, often free information are the census records and the microfiche records of the International Genealogical Index. A lot can be done by post, though nothing beats tackling the hunt in person, if you can. Your local Family History Society (address from the Federation of Family History Societies) can give you information about local sources, and there are lots of helpful publications, eg George Pelling's Beginning Your Family History, Willis and Tatchell's Genealogy for Beginners, P Palgrave Moore's Tracing Ancestors, Jean Cole's Tracing Your Family History. Your library should have some. Family Tree Magazine is an inspiring read, too, and many useful books are available through its postal book service. There's even one called No Time for Family History? by Eve McLaughlin, which focuses on what can be done by post (one of several guides available by post from her).
Crafts including sewing and knitting
"I am very happily married and at present entering my third year as an OU student… I have recently rediscovered the pleasures of embroidery although weak and stiffened fingers prevent me attempting anything too ambitious." (Carol J, who has RA)
DLF's Leisure Activities information sheet lists gadgets (plus suppliers' addresses) to make sewing, knitting, pottery, scraperwork, woodwork, etc, easier; for instance needle threaders, self-threading needles, electric sewing machines with special features, even a tapestry kit with larger holes to make life easier for arthritic hands. Battery-operated scissors are useful for cutting cloth, if you've weak or limited hand movement, like me.
Bear in mind that OTs advise against keeping a joint in one position for long periods, especially if you're trying to grip tightly, as you might with fine sewing. That could exacerbate RA hand deformity. If you must sew by hand, try tacking, cross-stitch or blanket-stitch. Anchor your material firmly to a stand, your knee, or your chair arm, so you've a firm surface and don't need to grip.
Machine sewing may be better, though more expensive to start with. Once you've mastered it, you can make your own clothes, or adapt bought clothes. You can make toys, children's clothes, and gifts, too. I use a portable lightweight machine with foot control. Some machines have helpful built-in features, eg needle-threader, bobbin extractor, thread cutter. Other adaptations can be made too. Take a good look at what's available before buying, try out different machines, and if you come across any particular difficulty, contact various manufacturers (or DLF) to see if they can suggest a solution.
Most of the major pattern houses (eg Vogue, Simplicity, Style, Butterick) have regular magazines you can study at home and even buy patterns from by post. Some publish guides to basic techniques. Or try a book like Ann Ladbury's Making the Most of Your Sewing Machine (B T Batsford). Small ads in the magazines are useful sources of mail-order fabrics and accessories like belts and buttons. The place for buttons by post is Button Box (send SAE for leaflet). Two mail-order suppliers of haberdashery (eg fastenings, tape, ribbons, elastic, zips, shoulder pads, facings) are Myra Coles and Couture Haberdashery.
Knitting and needlework I know several YPAs who enjoy knitting, though it's something OTs aren't usually too keen on for dodgy finger joints. For mail-order supplies, both Readicut and Falcon by Post produce wonderful catalogues with designs, well-known yarns, books, plus useful accessories (Readicut's includes a set of bamboo and birch needles which they say are ideal for people with arthritis). Other suppliers of wool by post are the Direct Wool Group, St John's Wools, Yorkshire Mohair Mill and Brockwell Wools (both do a wide range: from acrylic or wool or cotton, to mohair or even silk or alpaca). Needlework kit suppliers include Readicut (their crafts catalogue includes 210 shades of Paterna pure wool yarn), Needlework Kits by post (all sorts, plus special Christmas and Easter designs), the Royal School of Needlework, St John's Wools. All produce wonderfully inspirational catalogues.
Other crafts Endless possibilities! Seek inspiration in magazines, your local library and bookshop, the Search catalogue, catalogues below and Women's Institute publications. Mail-order firms can supply everything from patchwork templates, dolls' house fittings, soft toy fillings and patterns, to teddy bear eyes and growlers! There's usually a small cost for the catalogue, so check by phone or SAE first. Suppliers include:
Singing and Music
Pamela Waterhouse found it very frustrating when RA stopped her doing her favourite keep-fit, yoga, and disco dancing:
" Luckily, I also have a small singing talent. and have always been in a choir or singing group. I was always too nervous to sing solo but in the last four years I am quite in demand locally! I'm making this sound quite grand but I have sung to an audience of 200 and often sing to a group of about 100 ladies in WI. I can't believe it's me sometimes."
Maybe, like me, you aren't sure you share Pamela's talent? Despite grave doubts about hitting the right note, I was fired with enthusiasm by my keen singing friend Gwen (also with RA), and found some Saturday afternoon classes for beginners. Nerve-racking at first, but we were all in the same wobbly boat. I still can't sing brilliantly, but I felt really exhilarated after the classes. Wonderful to do something with my body which I could (more or less) control, unlike most of the time when it does its own thing regardless.
A good starting point might be a local choir which doesn't take things too seriously. Your local library could help you find one. Many already have members with a disability, and should be helpful if you explain any arthritis difficulties. An alternative to a regular commitment would be to go on a residential singing weekend. Gwen and I sampled some. Great fun. Details in NIACE's Time to Learn. A couple of helpful books are Graham Hewitt's How to Sing (Elm Tree Books) and Howard Shanet's Learn to Read Music (Faber). Even if you can't get out to classes or a choir, practise at home, learn a few songs, and lead the festivities at the next get-together of friends or family!
Some YPAs have made records. Frost at Midnight is a cassette of songs by Alan and Denise Whittle (available by post from them). Many are 'country' songs, but some are about Denise's arthritis, eg Cure for Arthritis Rag and one about other people's reactions to her "What do you find to do all day… sitting in that chair?". Young Arthritis Care Contact Julia-Ann Kerner wrote and recorded Christmas All Over the World (copies available from her). Another Contact, Kata Kolbert, is a singer/songwriter whose records include Live Your Life (Nevermore) and By Word of Mouth. She's happy to give advice to anyone wanting to know more about making records or selling songs. She's an enthusiastic member of the London Disability Arts Forum (LDAF), which has:
"registers of disabled performers in all areas of the arts and organises 'workhouse' cabaret evenings all over the capital on a regular basis, where disabled artists perform (for a fee) in accessible venues… Even if like myself, someone wishes to perform for disabled and non-disabled people alike, getting on to the disability arts circuit is a must. Not only is it very active and vibrant, growing all the time, but it offers a good grounding in the art of performing… One important point: the views of many performers of this scene are considered radical and 'anti-establishment': we're not talking about 'art therapy' or 'charity' peforming – in fact charity is a dirty word in these circles and if these views make you feel uncomfortable then you may not fit in!"
Playing music, rather than singing, may be difficult, but Janice Simons found she could manage a small electronic keyboard (weighing 1.5 kg/3.3 lb):
"Soon I was able to play quite acceptable tunes from the large lettered music… The sounds that can be made with the 44 small keys and nine instrument voices sound really quite professional, anything from string, flute, piano, guitar, to vibraphone, together with the rhythm box of waltz, swing, rock, and latin, make some really up-to-date music. Accompanying the melody with the left hand [is] less of a problem than on a piano where you need to be able to span the keys. These keyboards have a one-finger chord button which when depressed turns the keys at the left-hand side of the keyboard into automatic chords, thereby making one key sound like a three-finger chord." (In Contact)
Artsline can supply general information to help with musical projects both amateur and professional. Besides giving information about access to the arts for people with disabilities it actively encourages participation in the arts and can tell you what exists in different parts of the country.
Photography
Many of us enjoy taking and showing photographs. There are courses and clubs for anyone who wants to take it more seriously; ask your local library for information. The Disabled Photographers' Society can advise on overcoming disability problems, publishes a newsletter with equipment, tips, sales, small ads, and also runs an annual competition.
Glyn Barney, who developed RA at 15, works as a freelance photographer, and has worked for Homes and Gardens, the publishers EMAP (particularly on custom car magazines), and for Shell. He took a three year diploma course in photography at West Surrey College of Art and Design. The photographs on the cover of this book were all taken by Glyn.
Penfriends
If your legs won't take you to meet other people and to see other countries, this is certainly one way of overcoming the frustration. Great fun, anyway, even if that's not a problem. One YPA, who's in her 20s and has had RA since she was 16, has 70 or so penfriends!
Some penfriend clubs cater specially for people with disabilities, some are mixed, and others are general, for anyone. If you have difficulty writing, you might prefer a club where correspondence is by tape or cassette. Send an SAE always, when writing to a club for information. Specially for disabled people:
Two special interest correspondence clubs (for anyone, not just people with a disability):
You could ask if your library knows of others, connected with your own special interests. Other 'non-disabled' general groups (don't forget to send an SAE) include:
Citizens' Band Radio
"I discovered CB radio and soon made lots of friends. Even now eight years on I don't know what I'd do without it. I joined clubs and went on 'eyeballs' and to meetings. Even my Mam used to go to the discos. Even romance has blossomed a few times although nothing permanent as yet! It's great company for me." (Janet Mason, JCA)
To join in, you'd need a CB transceiver, not cheap (cheaper second-hand) plus small transformer, but after that it's cheaper than the phone because there's no charge for 'calls'. There's a special magazine and many areas have local CB clubs with social evenings and talks. Some members volunteer to run the emergency channel on which people can call for help. For information send for CB Citizens' Band magazine.
The countryside and birdwatching
The Royal Society for the Protection of Birds (RSPB) produces leaflets on birdwatching, including RSPB Reserves for the Disabled which describes reserves with wide surfaced pathways and nature trails, special boardwalks, rest benches, toilet facilities, bird watching hides and information centres. There are also leaflets for armchair birdwatchers! The Suffolk Ornithologists' Group has produced the excellent low-cost Easy Birdwatching: a guide, with maps and photos, to access and facilities at 60 sites mainly in Suffolk. In Court Associates do a gadget, Threshold A Frame, which makes supporting binoculars easier for people with stiff shoulders.
The Countryside and Wildlife for Disabled People (RADAR, in association with the Country Landowners' Charitable Trust) lists over 950 accessible sites throughout the UK, and includes birdwatching, beauty spots, fishing, farm and nature trails, and bed and breakfast places. I visited two sites recently, Pensthorpe Waterfowl Park (near Fakenham, Norfolk) and Peakirk Wildfowl Trust, Cambridgeshire – both fascinating, and wheelchair/electric scooter accessible.
The AA Travellers' Guide for the Disabled includes a section on countryside parks and picnic sites with special toilet facilities. Several water authorities publish helpful leaflets, eg Welsh Water's free booklet Reservoir Recreation with Special Interest to the Disabled (fishing, birdwatching, accessible Visitors' Centres and car parks with good views). Ask your own local water authority if they produce anything similar.
Besides historic houses, the National Trust owns more than 100 beautiful gardens, 465 miles of breathtaking coastline, 530,000 acres of open countryside and entire villages. The Trust produces a booklet Facilities for Disabled and Visually Handicapped Visitors (free for SAE). It includes NT properties where you can borrow a wheelchair, just for your visit; phone beforehand to check availability.
Even some of the NT's countryside facilities are more accessible than you might imagine. Wicken Fen, for instance, is a nature reserve where the Trust has built a circular 1km long boardwalk route that gives wheelchair users the chance to see unusual wetland. There's also a disabled toilet and exhibition centre with ramped entrance.
Gardening
One compensation for being forced to slow down by the arthritis is finding more time to enjoy nature and the changing seasons. And a garden, provided it doesn't become a burden, can be a real tonic, and incentive to 'keep going' as you wait eagerly to see what each season unfolds.
"At the moment I'm sitting in a small conservatory which we had built on to the back of our house. It's so peaceful, as I watch the birds come and go, with the sound of light rain hitting the glass. The garden isn't huge, by any means, but it's full of various shrubs and flowers. Hubby curses the job of looking after the garden but when it's done and tidy it really is lovely." (Marilyn S, who has psoriatic arthritis.)
You might still manage all or some of the gardening yourself. Make things easier by changing the layout and plant types. Find the right tools to overcome bending, reaching and gripping problems. Sit instead of standing, and ration carefully what you do and don't do. Or copy one YPA's particular talent: "although only able to participate in a limited way I am however very good at supervising and nagging my husband in the garden!"
I concentrate on perennials, ground cover plants and on allowing nature to do its own thing (partly, anyway), and have actually won local flower show prizes for my apples and roses! I sit on a high stool to garden and use long-handled lightweight tools, which include a long-handled weeder and long-handled flower-picker which cuts the flower then holds it (from suppliers on page 144), and a lightweight range of garden tools which fit interchangeably on to a long extension handle. Mine are by Gardena; Wolf Tools make others, and Griffin tools have variable telescopic handles, adjustable for individual height and reach. One of my best finds is a ratchet pruner, which cuts easily through anything from a flower stem to a thickish branch with next to no strain on the fingers (Ceka Works).
Look for problem-solvers in the excellent Gardening (in the Disability Information Trust's Equipment for Disabled People series). It includes garden design, garden tools, choice of plants, tackling weeds, hanging baskets, indoor gardening, buying wisely, clubs for disabled gardeners, other sources of information. Superb ideas for any gardener.
DLF's Leisure Activities sheet lists other books with a specifically disabled slant. Look too at the vast range of garden books aimed at making life easier for any gardener, like Judith Berrisford's The Weekend Garden (Faber), Laurence Fleming's The One Hour Garden (Ward Lock). Learning about weed control techniques, mulching, ground cover plants, etc, all helps cut down on the work.
Plenty of enjoyable gardening can be done simply sitting in an armchair, looking through the window, or browsing through gardening books and magazines and catalogues for hours on end. For inspirational books look out for writers like Christopher Lloyd, Rosemary Verey, Robin Lane Fox, Peggy Cole, Alan Titchmarsh, and Dorothy Hammond-Innes (Her My Home is My Garden is just the read when confined miserably to bed).
Seeds and seed catalogues (eg Suttons, Thompsons, Hilliers, Mr Fothergill's), and plants (eg Highfield Nurseries) are available by post; these and others are advertised widely in newspapers and gardening magazines. Try some unusual ones too, for instance:
Even without a garden you can enjoy window boxes and house plants and growing things from pips. For ideas dip into The Pip Book by Keith Mossman (Penguin) or How to Grow Weird and Wonderful Plants by Paul Temple (Beaver Books). Hazel Evans' The City Garden (Futura) explains how to grow almost anything even if you've only got a window box. Or how about some plants, or even a whole real garden in miniature (tiny trees, eg willow, mountain ash; fuchsia just 2" high, even a tiny thatched cottage and miniature lawn mower!). – Get the catalogue Nursery of Miniatures from George Thrasher, in Devon. Borrow from somewhere Anne Ashberry's Miniature Gardens (David and Charles, 1977, now out of print) or J Constable's Landscapes in Miniature (Butterworth, 1984).
You could specialise in a particular type of house plant, for instance:
The Good Gardener's Guide (Consumers' Association/Hodder & Stoughton) lists many more specialists. Local flower shows are enjoyable, but not if you've got to fight your way through a crush of people. The Ipswich Flower Show thoughtfully opens an hour early on one day, just for disabled visitors. Something worth suggesting in your area?
I've mentioned two specialist clubs above. Another, the Hardy Plant Society, has several specialist groups within it, including a Correspondents' Group. The Group's for anyone who wants to keep in touch, solely through the post, with other people, worldwide, who share an interest in plants. There's a chatty, informative quarterly newsletter. Two clubs now specially for people with disabilities:
Sports and physical recreation
You may have to give up very energetic sports like tennis, squash, badminton and football, but you don't have to give up everything. There are other activities you could try, like swimming, pétanque, croquet, horse driving. With the right equipment and help, YPAs at the Kielder Adventure Centure (page 274) have even found themselves riding, canoeing, orienteering, shooting, sailing, abseiling, and doing archery! Try Technical Aids for Disabled People (page 146) for help if a special piece of equipment or modification might make all the difference to your doing or not doing something. Take heart from an In Contact article by Chris Wood (has RA):
"Two years ago, after constant nagging from friends, that swimming (as we all know), would do me the world of good, I learnt to swim. It took me just two lessons to get up the nerve to take both feet off the floor of the pool and from then on there was no stopping me.
"Of course it didn't stop there. Once the lessons were over, I joined a disabled people's sports group at the local recreation centre. And, as I said, there was no stopping me. I have now added darts, skittles and table tennis to my repertoire, although I can't own to be an expert in any of them.
"…I always had a desire to try archery. No doubt you're thinking it's a strange sport to want to try, since it requires strength in the arms and hands. But, with help from an expert to choose suitably weighted equipment, I was able to have a fair crack at it. And surprisingly enough there were no serious after-effects. Mind you, I can't claim to be ready for the Olympics, I haven't even hit the target! But it has made me a lot more open-minded about trying new ventures, instead of being so sure I'd be no good…"
Whatever you decide to try, get your doctor's blessing first, and do it only if you and your body enjoy it and feel some benefit. Don't see it as a challenge match between you and a disobedient body. If it causes pain and strains your joints, stop.
You could also participate by becoming, say, a cricket scorer, a tennis umpire, or simply a keen spectator. You might find helpful Peter Lawton's Spectators' Access Guide for Disabled People (RADAR). It includes all sorts of sports and over 250 venues, with information on viewing facilities, car parking, access to toilets.
The DLF produces a long list of sport and recreational facilities for disabled people plus useful publications. The major national co-ordinating body for sport – the Sports Council – can put you in touch with the national organisation for any particular sport. Even if it doesn't specifically cater for people with a disability it may be able to offer advice. Try the British Sports Association for Disabled People too, and your local DIAL.
Swimming Swimming's the A1 sport for grotty joints, allowing us to exercise muscles without straining joints or fighting against gravity. There are sometimes off-putting problems like public sessions monopolised by Incredible Hulks or Over-Active Brats… One YPA solved the problem by getting a special session set up on Saturday evenings. Another decided the fact she couldn't swim was irrelevant:
"I was in one of my bulldozing moods in which I don't even contemplate defeat. I would buy three pairs of armbands for myself and the kids and we would all splash about merrily together in the learners' pool, and I wouldn't care a damn if people wondered who on earth was the misshapen 30 year old woman with armbands. So before all my good intentions came unstuck and before my knees turned back to jelly I phoned the Olympic pool, explained my difficulties to one of the managers and was kindly informed that we (me, hubby and kids) could use one of the school changing rooms any Sunday. In that way, hubby would be there to help dry and dress me." (PB)
Find out if there are special sessions locally, eg for adults only, ladies only, or specifically for disabled people (sometimes warmer than usual). Some pools may have a hoist, or special steps to help you get in and out. Ask your local authority's Leisure Department, or the Association of Swimming Therapy. AST has over 50 clubs in Britain, and runs special sessions, with trained instructors and helpers if needed, so you could go along even if you've no one to go with you. Some clubs can even help out with transport. The AST has published a book Swimming for the Disabled. Glenda Baum's Aquarobics (Arrow Books) is 'non-disabled', but might give you ideas for adding interest to water sessions: check which are OK first with your doctor or physio. One YPA who tried them out enjoyed the slow warm-up and wind-down sections, but very sensibly avoided the fast middle section.
Exercise supervised by physios/hydrotherapists in very warm water, hydrotherapy, is prescribed for some people with arthritis. Pools are specially equipped to ease getting in and out, and some have sessions open to the public, eg the Worcestershire Clinic & Brine Bath in Droitwich, and the pool in Nairn, Scotland, managed by the Nairn Hydrotherapy Trust, a charity. Members of Arthritis Care can use the hydrotherapy pool at the Horder Centre for Arthritis, Crowborough, East Sussex, at a reduced cost. Ask your local DIAL or rheumatologist if there's anything similar near you.
Pétanque The French equivalent of bowls, pétanque (or 'boules') is something Haydn Martin (RA diagnosed at 44) enjoys:
"Having played most sports myself to a fairly high standard and eventually having to give them up and as a result, inevitably losing contact with various circles of friends, I can truthfully say that the people who play pétanque are the most friendly and without exception wherever I have played have made me most welcome."
You can play pétanque purely for pleasure, or take it up competitively. Haydn takes part in international competitions. His team has represented Britain in the World Pétanque Championships. His other talents – artistic – have led to him selling caricatures of pétanque players and giving the proceeds to arthritis research. For the name of your nearest club contact the British Pétanque Association. By the way, there's a natty gadget for avoiding problems bending to pick up the boule – a magnetic boule lifter, available from OBUT Boule (UK), who sell a range of boules accessories.
Boating and sailing Specially designed dinghies at places like the Kielder Adventure Centre allow people even very disabled by arthritis to have a go. Find out about other opportunities through Water Authority leaflets. Some inland waterways narrowboats are now specially modified to take disabled people. The British Waterways Board publishes a list of operators.
On a larger scale, how about crewing a square-rigged sailing vessel at sea? The sailing ship Lord Nelson is purpose-built to be crewed by a team of able-bodied and physically-handicapped people working together. There are lifts between all decks, which are all flush with no steps, the main mast has a lift seat, there's an audio compass for blind people, and a bright track radar screen for partially sighted people, etc. Each cruise lasts an average of 11 days. Most of the volunteer team is sponsored (maybe a self-help group or charity might help sponsor you?). Details from the Jubilee Sailing Trust.
Angling 'Wheelyboats' are wheelchair-accessible boats for fishing on inland waters, and there are now over 20 dotted around the country, from Craigavon Lake, Northern Ireland and Alaw Reservoir, Gwynedd to Elsham Park, Yorkshire and Ardleigh Reservoir, Essex. Individual water managers have information on hire charges and availability – contact your water authority, or the Handicapped Anglers' Trust for information. Gadgets like the 'Rodmaster' may help some people – it transfers the weight of a rod from wrist to upper arm (from Hawton Ltd).
Horse riding and horse driving
"Before arriving at the Kielder Adventure Centre my last ride on a horse had been 19 years back when I was 12. A bad experience at that time, and the difficulty of getting on to a horse ever since, had convinced me that I would never ever ride a horse again… With the help of some of the Centre's staff we were able to get on our mounts. The same staff led us on our walk, each one leading one of the horses on a length of rope… It was a great experience. Life seemed different from the pony's saddle, slower, but with more to see." (Peter Nightingale, writing in In Contact)
If Peter could do it, how about you? Contact the Riding for the Disabled Association for the address of your nearest branch. As an alternative to sitting on a horse, how about driving one, comfortably seated on a specially converted buggy, accompanied by a trained attendant? Contact Riding for the Disabled, and ask about 'Driving for the Disabled', or contact the British Driving Society.
Cycling Some YPAs manage on ordinary bikes or trikes; one Irish friend (with RA and 15-year old knee replacement) enjoys cycling holidays in France. Another, Babette, 'enjoys' the occasional sponsored bike ride: "it feels good to be able to join in". Others, like Pamela Waterhouse, use an adapted bike now and again (page 184).
Ask your local DIAL if there's anything locally like the Cycling for Disabled People cycle hire scheme, operated by the Macclesfield Groundwork Trust. They hire out tandems and tricycles at Tatton Park, Cheshire.
Flying Have you ever dreamed of learning to fly? And at someone else's expense? In memory of Sir Douglas Bader the Royal Air Force Benevolent Fund annually awards several 'Flying Scholarships for Disabled People'. Each is for a flying course of about a month at an approved flying school. Candidates must be between 17 and 40 years old, and registered disabled. Apply in October to Flying Scholarships for Disabled People.
Shortlisted candidates attend a residential selection board at RAF Biggin Hill in April. It's the same as prospective jet fighter pilots undergo, and therefore pretty strenuous and demanding. I speak from personal experience! The Board was stimulating and fun, and the other candidates were great company. (Hot tip: brush up on your maths.) Alas I didn't win a scholarship, but received a consolation prize of complimentary tickets for the fabulous International Air Tattoo at RAF Fairford the following July.
The Duke of Edinburgh's Award Scheme
The booklet A Challenge to the Individual describes how a young person with a disability can take part. Details from Duke of Edinburgh's Award Office. The scheme's in four sections – service, expedition, skills and physical recreation.
Competitions
A good way of passing the time and giving yourself something to look forward to: the day you win! There are two newspapers for keen competitors – the Competitors' Journal (CJ), fortnightly, which dates from 1913, and the more recent Competitors' Companion (CC), monthly. Both list current competitions with closing dates, and give helpful tips.
Computers
For a total novice's introduction, look at books in the children's section of your library or bookshop, something like The Beginner's Computer Handbook (Usborne), and go on from there! Or L R Carter and E Huzan's Computers and Their Use (Teach Yourself Books, Hodder & Stoughton). Computing magazines and user groups (eg Amstrad User Group, Lotus User Group) are treasure-troves of information. You can enjoy computing at so many different levels, and who knows, a computing hobby might lead to a computing career. (See also pages 254 and 269.) Roger Jefcoate (page 146) can give specialised advice on using and obtaining computers, and tell you about any special discounts. For instance, as I write, IBM is offering a 40% discount on all PC and PS/2 products to disabled people who would 'gain therapeutic or rehabilitative benefits through using the products'. The British Computer Society has a special Disability Programme, with a quarterly journal and an advice help line. The DLF publishes Computers and Accessories for Disabled People.
Joining a club or society connected with your hobby or other interests, eg environment or politics, is an excellent way of making friends and taking your mind off the arthritis. Ask at your local library or church for information on local clubs (some have nursery or 'baby-watching' facilities, if needed). One YPA got back into church life, where she found herself "part of a lively, caring church", joined two choirs, and "all in all I rarely seem to have an evening in. I wonder how I found the time to go to work."
Don't overlook clubs like Young Arthritis Care/Arthritis Care, other self-help groups, or PHAB (Physically Handicapped and Able Bodied, page 122). Just because they're geared to people with a disability or arthritis doesn't mean that you won't find a lively group of people with a kaleidoscope of interests there too. (And you'll be accepted for what you are, rather than a curiosity-that-must-be-cross-examined.) PHAB has more than 450 clubs where physically handicapped and able-bodied people meet and mix. Or channel your energy into your local ARC group, DIAL, or Access group. It's good to feel you can make something positive out of your unwanted acquaintance with the arthritis.
Several general (non-disabled) social clubs operate throughout Britain including:
There are plenty of groups, too, linked to particular hobbies and interests, many dotted around this book, for instance gardening/plant clubs (page 288), fishing (page 290), pétanque and other sports (page 288 onwards), for homeworkers (OwnBase, page 270). Also, for anyone, married or single, with a spice-loving palate, there's even the Curry Club!
Women's clubs
Many people with arthritis are young mums or middle-aged housewives, who can feel isolated and miserable, stuck at home. Besides making contacts through Arthritis Care or NCT (page 234), other groups are worth trying too, as Pamela Waterhouse (with RA) found:
"I joined WI 18 months ago. It was one of my better decisions. It has given me a lot of enjoyment and fun. I even persuaded my mother to join. I was honoured to be voted on to the committee in November and am now 'Press and Publicity Officer' which keeps me quite busy."
The National Federation of Women's Institutes can tell you where your nearest WI is. Branches hold monthly meetings with talks. The Federation also has its own Adult Education College, Denman College, in Berkshire. Here are some other (also non-disabled) women's groups to choose from:
The Women's National Commission (WNC) publishes a free booklet – Women's Organisations in Great Britain, which lists more than 160 groups.