I think I annoy my health professionals.
It’s just a feeling they may see me as a little ditzy or superficial (until I start on about Ph balance or calcium absorption, then they just seem bemused). This may be because whenever we are talking about mobility aids, crutches, splints, slings, hoists, adaptions; anything really, my first question is generally “What colour is it?”.
This never seems to have been something they have come across before. Maybe it’s just me, maybe other people are busy being worried and scared in the hospital and think about these things later. Perhaps it doesn’t occur to people to ask for an adapted wetroom floor that matches the (new organic, in the sale) bath towels. Whatever it is, it seems to be one of my roles to crusade for stylish mobility aids.
Basically, mobility and disability aids and adaptions and various types medical equipment are part of my life as they are part of many other peoples lives. I want what I have in my life to be beautiful as I want a beautiful life. I see no reason why the aids I need would prevent this. Some people need climbing gear to climb a mountain, I need a wheelchair to leave the house. Yes I would really rather not be ill and rather not need any of these things but I do and so want them to be lovely as well as functional. Some of the things they try and give out are just depressing. They gave us grey slings! So
a) I am being hoisted to be transferred which is uncomfortable and rather undignified to say the least
b) I am ill enough to need this which is less than super-fun
c) this is now a part of my life and what do they give me? Horrible looking grey slings with yellow edging! Ewww! I had to look at them and use them every day!
So we began to make phone calls, and look online, and ask people. They must make coloured slings somewhere. Linus secretly bough material and ribbon in my favorite colours, and sneakly asked me questions on how to sew “About sewing, I was wondering…Can you sew by hand or do you have to use the machine? What kind of stitches do people use?” He planned to sew the material over the sling…he told me and we thought about it and realised sewing shiny material onto it might make it slippy and make me fall out of it – not good plan. We considered dyeing them, we aked the O.T how much slings are but… Whoa! No we cannot dye something that costs that much money and isn’t ours!
Finally they brought me a pediatric full body sling in cheerful lime green with lovely sage corderoy lining, thats more like it!
Why would I accept mobility aids that don’t make me feel empowered. I know it can be hard, when I had my first wheelchair I cried and cried and was so embarressed, I was 18, I was ashamed to need a wheelchair, now I see my wheelchair as the freedom to get me to go places I couldn’t go otherwise. I can sit in it proudly. Also it is supercool, metallic sapphire blue with a purple cushion covered with organic Fair Trade welsh cotton.
It is alright to want things to look nice, I know there are more important things out there but our lives and happiness is important too, just because we are sick we do not have to accept products that we wouldn’t accept if we were not sick. So here are some ideas about things we have done to individualise and personalise medical aids and accessorise:
1. Ask if you can have it in another colour/ size/ style. Really, ask. Years ago I had the option to ask for a coloured wheelchair and I didn’t as I thought I was being rude and asking for too much, and we ended up with dull one for years. The next time I asked (and fought) and we got one.
2. If they say no, ask why not? To me they always say ‘no-one wants them in colours’ or ‘people want them to be discreet’ – I ask you what is more discreet, nice black or subtle navy or a clumpy ‘flesh coloured’? and really whose flesh is that colour? I want to meet some of these people. I want the manufactures to wake up, noone is that weird shade of peachypink! Also not everyone is white, so calling that flesh coloured is insulting. It might be the tone that you associate with flesh, but its not that for many people of colour worldwide.
3. Say please. Ask if they could check, could they make a phone call, could you have the number and call the manufacturer, could we please see. It’s important to you, its part of your life, you are a human being, you want dignity and choice. Say, I am a child/ teenager/ young woman/ young man/ person/ woman /man in my prime/ mother/ father/ older woman / man/ person I have my pride, I want to look good, I value my self esteem and appearance. Please help.
4. Adapt. get out the spray paint. No one ever seems to pick up the equipment they give to us. When we got a new wheelchair, I couldn’t get rid of the old ones, the wheelchair service would not come and collect them or the bath lift (we now have an adapted wet room) or anything. In the end we rang and said if they are not picked up in a month they go to the red cross. They went to the red cross. So with all the fussing about equipment in the end I asked the hospital “Are you ever going to ask me for these splints back?” He said no, so we are spray painting them! We put cool stickers over them, we dye things, grandma made a lush cushion cover for my wheelchair cushion.
5. Go the extra mile. Before we got a coloured wheelchair everyone told me you can’t get them in Wales, so in the end I said look, if you give me another black wheelchair I will have it sent to a car spraying place, have them spray it the colour of my choosing as they would a car and then if you ever want it back I will have it re-sprayed black again before we return it and there is nothing you can do about it.
6. Research. Look online, ask in support groups, look for modifications, google, see if anyone has done anything cool on etsy www.etsy.com. The hospital say I need to wear a certain type of shoes to stop my feet turning and dropping more and to support and cushion my bones from impact while transferring but the shoes they recommend are ugly I think… sorry, but they are. So we have looked and looked and found a gorgeous pair in cherry and silver which do the same thing and the hospital say they are fine so now we are just saving for them. There is always a way.
7. We love the internet:
Cool Crutches: http://www.coolcrutches.com/
Broken Beauties: Slings, walkers and crutches with style
Arm Candy Warrior Wear: Fashion sleeves to cover compression sleeves for people undergoing treatment for cancer/canser and/or who are survivors and have lymphedema
Healing Threads: Dignified and stylish patient and recovery wear
These are just some things that I know of/have used. Create your own stylish healing love list.
8. Think outside the box, come up with your own adaptions, work-arounds and creative ways.
9. Re-decorate. Yes we use lots of mobility aids, but our house does not have to look like a mobility aids show room. Much of the equipment is functional, not beautiful. But even if you have to use a commode it doesn’t mean you have to stare at it all day. With a gorgeous throw and cushions and a corner it can look like a lovely chair.
There is a difference between trying to disguise disability through shame/ guilt etc. (been there and done that definitely) but there is also wanting our environment to be enjoyable. The question is, would you choose to have something looking like that in your home if you had the choice? I know you don’t have the choice, I don’t either, I know if any of us did none of us would be dealing with these issues, I know, but we are so lets make the best of it.
There is no reason to drop all standards just because we have challenges and can’t have everything our way because all this does is just make things worse. I have done it, I know, giving up and slumping in front of the TV sounds fun on days when you so do not want to be a cheery upbeat survivor and want to not have to face all this nonsense but it doesn’t help long term and gets boring. I’m not anti-tv (well, I am but lets pretend I’m not) and we all need some zone-out time occasionally but living life not watching it is harder but more fun.
Well, that is my experience, I have tried both ways.
So decorate and adapt, use your creative skills (and you have them) to shape your beautiful life! Things can look good, the grab rails in our bathroom match the floor and the towels and the accessories. So I think it looks good, I hope you don’t go in and think “Wow! accessibility city.” but instead “Cool blue calming space, with butterfly mirrors and a moon chart! …hmmm.”
10. Add to my list, blog about this yourself, think create, live. You are worth it, this is worth your time. You deserve to look and feel proud and yourself.
Polka dot coat – from my little sister.
Hair pin – vintage, a gift from a schoolfriend. Originally her great grandmothers.
Skirt – Jules’s and spotty top from Georgina. Starry scarf from charity shop in the Forest of Dean. Yes, borrowed finery but I love it all.
Thank you again to Jon Hobbs for the fabulous photographs.