Familiarise to normalise! adults, please allow kids to ask about disability

Yesterday I went to collect a desk for my craft room. A little girl of about seven was looking at me with my hand splints and waking stick. As she was looking, I smiled at her and she smiled back. No big deal, I wasn't bothered by this. It happens all the time, after all i'm in my late 20's, but look younger. I'm definitely not an old lady, but I certainly walk like one. What upset me about this encounter was her mum (I am assuming it was her mum), she pulled the little girl away and told her off for staring. Now, I accept that it is, in fact, rude to stare at other people and we should teach children not to do it. But when it comes to small children and people with disabilities maybe we should do things a little differently. 

I am someone different to who she might have encountered before, she might not know anyone who uses a waking stick, wheelchair or has splints. To this little girl I could have been as different from her as another species of animal all together, which is interesting when we consider that its normal to take children to the zoo, specifically to look at animals of other species. In life we encourage children to be inquisitive, to notice and to absorb things around them which are different from themselves. We encourage children to question and find out about the world around them, we encourage them to learn . But when it comes to other people who are different (perhaps with disabilities, perhaps different in  other ways) we tell them not to look, not to ask and to stay away... perhaps we are sending mixed messages! maybe we are teaching them that people with disabilities are strange and to be avoided, possibly even scary or dangerous. 

Maybe if something remains mysterious to a child he/she will find it hard  to be understanding and compassionate,as they grow up. They might grow to become fearful of difference. After all, our brains are hardwired to fear the unknown. If they're not given the opportunity to ask questions, kids can't learn that people with disabilities are just the same as them underneath the mobility aids. They may remain too uncomfortable to be able to have an open discussion about a persons limitations and what help they need, or if they even need any help at all. We might never move forward with accessibility, as the next generation find themselves unsure how to interact with people with disabilities. Not knowing weather to approach and offer help to that person struggling to get through the door, or leave them to it. 

Most importantly, children who have not had the opportunity to discuss, understand and to accept those around them with, may grow up to become one of the many adults who continue to stare at me with my walking stick/wheelchair. Like they have never seen anything so absurd as a young person with mobility difficulties. An adult who continues to speak over me when I am in my chair, not acknowledging me, or that I am the person making that transaction in a shop. They will become the adults who ask inappropriate questions or use offensive language. Yes, kids, its rude to stare...but its even ruder when its the adults doing it!

Before I was aware of my condition, aged 12 my mum took me to volunteer at a sport session for people with disabilities, it was a valuable learning experience for me. I learned a lot about the vast spectrum of health needs. It normlised disability for me. I realised disability as just another strand of diversity in the human race. Just like some people are female and some are male, some are heterosexual and some are homosexual. Its part of what weaves the fabric of humanity. Some people are different...that's OK, get over it.  

Now I am on the other side,  I would much rather hear a child ask their carer why I have a stick and hear them respond with an explanation, "some people have health problems and need a stick to help them walk". I'd rather have that kid in the restaurant come over and ask me about my condition, or just have a little chat. Then next time they meet a person with a disability it wont be alien, It will be another kind of normal. 

The little lady in the picture is my niece. she is 4, she knows auntie Annie needs a stick or chair to get about, that's my normal. She knows I can't dance, but I can draw and sing and read. She understands my limitations. She doesn't worry about it, She just accepts me for who I am. Children are mouldable, their world views are easily shaped. So please, shape them to be understanding, compassionate and tolerant.

We need to familiarise children with disability to make it normal. That way the next generation can grow to to become more accepting than the last. Please, familiarse to normalise 

I am grateful to my chronic illness for .... (ehlers-danlos syndrome)

Some things I am grateful for since being diagnosed with ehlers-danlos syndrome.

When I was first diagnosed I had a small meltdown...OK a big melt down. Now, two years on, I am learning to adjust. I am proud of the way I have adjusted. I have my ups and downs but I am grateful for the little things in life. I'm even grateful for some things I've got because of my illness. I wanted to share some of them with you. After all we could all do with a little bit more self appreciation.

1.Knowing I am not crazy! This is a big one for me. Since I was a child I knew there was something different about me. I knew I wasn't like all the other kids. I remember being quite a small child comparing myself to other kids and knowing I was not like them. I had aches and pains. I was more tired than other kids. I took longer to recover from simple medical procedures. For me getting a diagnosis was bitter sweet. I felt vindicated, like I wand to shout “IN YOUR FACE!!” at anyone who had ever doubted me. But at the same time I still wasn't happy. The realization dawned on me that by being right I actually have to live with a medical condition for the rest of my life. But one thing I knew was I wasn't a hypochondriac, I hadn't been making it up and I am not a drama queen. After the initial shock wore off I was super grateful for that.

2.I learned a lot about friendship. Some people simply don't know how to cope with your illness; you have to learn to be OK with that. Some people can't figure out a way to be supportive when there is no solution. You might drift from friends you'd have least expected, but you might find that others become your besties. Remember the people you love the most are worst effected by your situation. They are fighting their own battle coming to terms with what you're fighting. So cut them some slack. I believe they're doing the best they can. If they're not giving what you need, you cant change that. You just have to accept it. Sometimes you get the best support from the least likely places, friends that you didn't consider to be your nearest and dearest step up to the plate and are there when you need them the most. Be brave, share how you feel and your struggles, you never know who might surprise you. Maybe those further from your heart are able to look more subjectively at your struggle and offer the best advice. Who knows, all I know is my buddies are the best and I love them!

3.I learned what I love. When you have a limited reserve of energy you learn to prioritise your day. You learn to allocate a portion of your energy for things you want to do. I've learned to care less about the little things. At first I was always frustrated that there was stuff out of place or the dishwasher needed emptying, but after a while I realised these things can wait until the energy comes. They don't really matter in the grand scheme of life. Nothing bad will happen if you don't make your bed. What matters is how you choose to feed your soul. I learned to save my leftover energy for the things I love, like being creative, cooking, date night and visiting the amazing people I love. Become resourceful, you got this! You can find other ways of doing what you love

4.I have learned how strong I can be. Granted I have no choice. My options are fight like a wildcat or not, and become owned by my condition. Its up to me. Its Hobsons choice, neither option sounds that appealing, but faced with the two choices fight and be strong is the obvious one. Its not always the easy one. Its OK to get mad and shout and feel like rebelling against your treatment. Sometimes you've just got to let that crap out. Then dust yourself off and carry on fighting. When people say things like “you're so strong, I wouldn't be able to keep going like that” I often want to shout “of course you would, you dumb ass, you'd have no choice!” , But instead I hold it in and smile. Then, once I've calmed down a bit, I think damn! Maybe I am strong and maybe its OK to be proud of how strong I am

5.I'm grateful for the realisation that I was grieving. It took me a long time to realise I was grieving for my old life and the old me. I couldn't describe how I was feeling. I was sad about what I lost and angry about what my body was doing to me. I missed the carefree person I was and resented the wreck I had become. When I realised what I was feeling was grief I could start to process it and let go of the old me. I Allowed myself to begin repairing the broken bits. I stopped being so sad and eventually things started to make sense again. I felt that the colour came back to my life and I could start to enjoy the little things again. Its OK to grieve, just not forever. Its a process you have to complete, almost a right of passive for the chronically ill. You can make it to the other side. 

6.You can use your illness as an excuse to get out of stuff you don't want to do! Its great! Of course its really annoying when you actually can't do something you wanted to do because of your illness, but every now and then you get a little bit of payback in the form of a ready made excuse. Its OK to say I cant do it. I have been really bad at this, my mind is fiercely independent and stubborn (my body isn't). Admitting I cant do something doesn't sit very well with me. But sometimes I have to hold up my tremouring hand and say 'I'm out'. Sometimes it isn't that you have to miss out, sometimes its adapting and finding a different way of doing it. Admitting you need help is the first step to finding a solution.

7.I'm grateful for not caring what others think. Truth be told I've never really cared too much about what others think of my appearance. I wear what I want, I have odd hobbies. I'm comfortable with myself. Now I have mobility aids and splints and that's something I cant change. I can change how I feel about them though. When I first got my glasses (before geek chic was a thing) I picked a pair of big purple ones, my husband said “ if you gotta wear them you might as well own it!”. So I own it! I've adopted the same approach to my medical aids. I've glittered my walking stick, I've painted my splints and I tie dyed my tubigrips. I'm wearing them, they're not wearing me! People can see them anyway so I might as well make then fit my style. Get the flashing lights on you wheelchair wheels. Get the pink chair. Stick rhinestones on your walking stick or frame. Customise your splints. If it makes you smile, do it! You're still you!

My mate Sid; my walking stick and my Ehlers-Danlos syndrome

Sid the stick, he's my buddy old pal!

I got Sid after I first met my occupational therapist. I had never really been clear about what occupational therapists actually do, but when I had one visit me at home I realised they probably have one of the best Jobs. She explained to me that her job was to help me do the things I HAVE to do more easily so I have more energy left over to do the things I WANT to do...OMG...there is someone out there whose job it is to make sure people like me have a quality of life, not just that we can get dressed and have eaten.

Wow! Up until this point I had just been struggling on and not using a stick. My POTS symptoms and joint pain were making it very hard to get out and about. I was always looking out for the next opportunity to sit down every time we went anywhere. If there was no place to sit, I just wouldn't go. Which in hindsight, was clearly, a recipe for misery. My OT basically told me to stop being a stubborn Twat, suck it up and use the damn stick (I'm paraphrasing- she was definitely much more professional!)... once again she was right.

I remember musing aloud “I want a stick that I can fold up and put in my bag, but also has a little seat on the top. Wouldn't it be great if some genius has invented that”

by jove, they have....enter Sid the stick!

After weeks of trolling the internet I eventually found the Flipstick website. Dudes....seriously. I am not on a commission, I swear. But this has to be some of the best money I have ever spent! get yours here

Sid folds up into my bag. Which is amazing, because if get him out my bag in just the right way, Sid unfolds as I pull him out my bag and I can do a very respectable Mary Poppins magic bag impression! Flipstick also comes with a handy travel bag if you would prefer, I don't bother with mine though.

I'd like to use this junction to say, Yes, I've named my stick because I love him so much! No, I don't think its a real person. I joked about my mate Sid once in a session with a pain psychologist, this was a mistake. This is how I learned that mental health professionals lack a sense of humor, they take everything you say as gospel (in case you are suffering from delusions I guess). The more I tried to reassure her that I didn't believe my walking stick is a person called Sid, the more convinced she was that I in fact did. I gave up. She won that battle.

The top of Sid the flipstick folds down to become a little seat which I can perch on if I'm waiting in queues. I can become a little human tripod. Now Sid is black and white (they come in a lot of other colours), the brilliant thing about this is that in semi darkness you can't see the actual stick. So when I'm sitting on it, I look as though I'm doing some kind of insane floating squat! I get all kinds of double takes and then people laughing as they realise what I'm doing.

Our relationship has not been all sunshine and roses. For one thing Sid and the beach do not mix! Last year on holiday, my husband and I ventured to the beach, I settled on my lounger and folded up my lanky friend and chillaxed to the max. When the time came to head back to the hotel I found, to my horror, that sand had found its way into the folding mechanism on the top and I couldn't put the seat back up into handle mode. Needless to say meltdown ensued! But...thankfully my lovely husband saved the day and managed to get the sand out! Phew. No lasting damage.

But it gets worse...recently I had a little incident at a wedding. I wasn't even drunk, I swear! I was perching on the dance floor, doing my own version of rocking out (tentatively wobbling in a circle). When I managed fall off Sid, straight down onto my ass! The worst of it is that, because I was sitting on Sid, I landed on the hard plastic seat...lets just say me and Sid got a little too close for comfort and resulting bruise to my pride was as spectacular as the bruise on my ass! And who knows how many people saw my pants in the process.

Thankfully my buddies helped me up and I noticed that I had put my stick on a stray hair clip which caused my stick to slip out from underneath me. I cursed the day the bobby pin was been invented then sulked on a chair for the rest of the night! I felt so sorry for myself that I allowed myself a cheat on my diet and ate some chocolate cake, I decided I deserved it.

Generally though Sid and I get about well. I've been to gigs, albeit, with a human shield of my husband and sister in law either side of me to stop unsuspecting drunkards moshing me off my perch. We've been to the harry potter studio tour, where I considered getting on the green screen and pretending to ride Sid like a broom stick, but the queue was long and after a while sitting on Sid my coccyx starts to move. here me ans Sid rocking out at a fancy dress party last year..

To some people it seemed like a sign of me giving up, like I wasn't prepared to fight any more. But to me it was a way of adapting to my condition's limitations and allowing me to be able to do more of the things I want to do. I saw it as a means of finding balance and pacing myself. Just like my OT said, use less energy doing things I HAVE to do. Give myself more opportunity for fun.

I think understanding and acceptance towards people with disabilities and illnesses has undoubtedly improved, those of us with an invisible illness/ disability will know that there is still a way to go. There are still a lot of people who cant compute that a condition exists if you cant see it. Its not the way It SHOULD be, but at the moment it is the way of the world.

People who know me are fully aware of my condition and don't need me to use a stick to see and know how I struggle. I am able to explain to them what I need. But I found that as soon as I started using Sid, the general public had a visual queue to realise I was struggling. I found that more people begun to make allowances for my condition, They started opening doors for me, giving up seats on trains and in pubs. Suddenly no-one got impatient with my slow walking or when I had to stop and rest.  I  shouldn't have to carry a walking aid to alert other people of my situation, but I guess how else are people supposed to know that I need that seat?

I guess what i'm trying to say is, if you've been undecided if a walking stick might help you, it probably will. in more ways than you can imagine

Annie x