Wednesday, 12 October 2016

World Arthritis Day 2016 - The future in your hands

Today is World Arthritis Day.

And so, as part of the #WAD2016 campaign "The future in your hands", here is a small part of my story of living with a rheumatic or musculoskeletal disorders.

As a child I was different to my peers - often injured, more easily tired, constant pain and many other issues, but those quirks didn't become permanently disabling until I reached my early 20's.

By 24 I had become a wheelchair user due to severe joint problems and pain caused by a hypermobility syndrome (probably Ehlers-Danlos syndrome) where my joints are too loose, and the ligaments are easily stretched and damaged, although I wasn't diagnosed for another year or so. I steadily deteriorated. By 29, long term sick leave from my Environmental Health career had become formal medical retirement. It was an incredibly tough time - I felt that I had lost a part of who I was.

However, during one of my hospital stays I discovered a talent for drawing stickmen. And it seemed that people understood these stickman descriptions of how I felt much better than my attempts to explain using words. The solutions to my own problems around 'how do I make them understand' became products that proved to be the solutions other people needed too.

So while volunteering for the Hypermobility Syndromes Association - which provided the support I needed in learning to pace, and to respect but not fear my conditions and to get stronger and more acitve (contemporary dance is totally awesome and works fabulously around my physically limitations!) I also found myself setting up Stickman Communicaitons - using my stickmen to help create understanding for others too.

My RMD took a career I loved, but it also gave me a new career - which I love even more.

So yes, I really do feel that my future is in my hands. Both metaphorically and physically!

Thursday, 29 September 2016

Creating Better Communication about Mental Health at The OT Show

Innovative new products from Stickman Communications® that can help people of all ages with mental health conditions to communicate about their needs and how they feel.
Mental health conditions can make talking about anything a challenge – let alone communicating about the condition itself in a way that other people can understand and relate to. Thanks to a recent project with a group of college students who live with anxiety, depression, and other mental health conditions, Stickman Communications® recently released a new range of mental health resources to aid in this area, and samples will be available to view on stand A34 at the OT Show on the 23rd & 24th November (at the Birmingham NEC), along with products relevant to pain, austism, pacing, wheelchair use, fatigue, invisible illnesses and much more.

As is typical of the Stickman Communications® approach, these resources don’t have a medical focus, but rather they address situations and misunderstandings that individuals with mental health conditions want and need solutions to.

The keyring communication cards do not only focus on things an individual wants to say but might struggle with (such as needing to talk, wanting a hug, or needing to explain that they don’t feel able to talk right now), but also on concepts that can be very difficult to explain or are often misunderstood by other people (for example explaining how their anxiety affects them, or what it is like having hallucinations). The cards can also provide prompts for management techniques.

"These cards are incredibly handy and provide a quick way to indicate how you feel or what you need. I find that they are really useful if you want to discreetly make someone aware that you need some extra support. They are also great for explaining what would help on an ‘off’ day."  (Mental health blogger: )

An unexpected outcome of the project was a poster entitled “Mental Health: Things that can help”. “When discussing things which the students found helpful, it was quite difficult for them to come up with ideas, but the ideas they did come up with were so fabulous I had to create a poster out of them”, commented Hannah Ensor (the creative talent behind Stickman Communications®).

“….[These products] help me cope with my mental health issues because sometimes I sit and get bored and fed up and forget things that I could be doing instead of being bored of my own company and seeing this will remind me of other activities I could do to help with my mood.” (Customer review)
The full range of Mental Health related products can be seen at - or come along to stand number A34 at the OT show and have a look at the range of unique products - all created by working with people needing solutions to misunderstandings about their conditions.

Sunday, 25 September 2016

Why you don't need to say "I'm sorry you're disabled."

A recent blog entry was "Why you don't need to be sorry I'm in a wheelchair".

I hoped it would help people see that I don't need pity for using a chair.

Interestingly I had several responses from different people in various places saying "but they were really trying to say I'm sorry you are disabled."

I know that. But from where I sit "I'm sorry you are disabled" is 99% of the time, also very negative and unnecessary.

It's a little tricky to explain, and this only skims the surface, but hopefully it will make sense.

Personally, if, in a disability context, I have said "this sucks", then agreeing "yes, it does" is fine.

In pretty much any other context "I'm sorry you are disabled" - however it is phrased - is not comforting, nice, or remotely supportive.

Consider scenario 1:

You are newly disabled. You have a lot to come to terms with. It's tough. You need emotional support from people you are close to - from people with whom you have the 'This Sucks' conversation. But not from everyone else. You don't want to be 'the disabled one'. You want and need interaction with people who validate you as a person, remind you that you are still part of society, and that there is more to life than disability.

You venture out. feeling vulnerable as your mobility aid makes your disability public and you worry that 'disability' is all that people will see.

And then a stranger comes up and says "I'm so sorry you are disabled".

Well intended, but what is the effect?

For me at this stage, it made me feel worthless. Pitiable. Without use and without future. Making my search for my new future even harder. Confirming that my disability was indeed all people saw, and it overshadowed all my other characteristics - even my humanity.

Consider scenario 2:

You have been disabled for years. You have a pretty good handle on where your limits are, have a stock of aids, adaptations, lifestyle choices and skills that enable you to get on with life. You often aren't conscious of your difference because it is so normal to you. Perhaps you are on your way to work, or perhaps you hare enjoying a special day out. Either way, you are getting on with the life you live.

And then a stranger comes up and says "I'm so sorry you are disabled".

It might be well meant again. But what is the effect?

Personally, I am blindsided. Alice down the rabbit hole. I don't know how to reply.

They see tragedy. I see me living a life I love. The two just don't match up.

I hear this type of comment almost every time I spend a day out and about. A barrage of pity for something that is a) my normal, b) something I can't change and c) doesn't stop me living a rich and full life.

Disability is an ever present part of my life. I can't separate it out. It is here for every positive experience and every negative experience. It is not good and not bad. It is just here.

Everyone has times when things are tough (problems with health, finances, relationships, family, etc). These are a part of being human. Everyone has them. They just aren't always visible to a passing stranger. My challenges don't make me pitiable just because you think you can see them (remember that sometimes people see difference, and assume challenge - when it's not really challenging at all). These challenges just make me human.

How would you feel about constant pity from strangers, in reference to something that is a) very personal, and b) your normal, every single time you go out, for the rest of your entire life?

I realise that sometimes people do feel sad or upset when they see a young disabled person. If you feel that way, please work through it yourself. Pitying me won't help either of us.

I was just finishing this blog post when a disabled friend (S) called for a chat. S had had a wobbly day and a woman had helped her out. She wanted to be supportive. After a brief conversation about S's disability, she stated "It's a tragedy". " actually, there's lots of nice things in my life..." The woman replied "No. It's a tragedy, you're so young, it's tragic." - and then left to answer a phone call.

How could a complete stranger see one small part of her life, and write the whole lot off as a tragedy? - How could someone be so completely unable to consider the possibility that S's life was good?

We chatted. It's such a common occurrence. And very, very unpleasant. How can we deal with it? Doing nothing means they will carry on with that behaviour, believing it to be 'showing support'. Being aggressive won't get the message across as they will think I've misunderstood their 'supportive action'.

Based on an idea from S, here's what I'd like to say next time:

"I know you are trying to be supportive, and mean well, but my life isn't a tragedy - it's just different. Everyone has challenges, and my life also has many good and happy things. There is no reason for you to feel sorry for me, so please stop. Please just stop."

So if you ever get the urge to say "I'm sorry you are disabled", please stop and think:
Will a pitying phrase have a positive effect? - If the answer is no: Don't do it.

Instead, let us get on with enjoying the lives that we live.

Saturday, 24 September 2016

"Change the Future" conference for young people with rheumatic and musculoskeletal disorders!

[I apologise for the number of acronyms in this!]

EULAR Young PARE are the voice of young people (18-35) with rheumatic diseases across Europe, and work to create improvements in the lives of young people with rheumatic and musculoskeletal disorders (RMDs).

You can learn more about them and their work here:

A few months ago, as their Patron for children and young people, I was nominated by the Hypermobility Syndromes Association to the Arthritis and Musculoskeletal Alliance (ARMA) as a delegate to help represent both organisations at EULAR young PARE's international conference on the 21st - 23rd October, titled "Change the Future."

Yesterday I received an email confirming that my nomination had been accepted, along with 3 other individuals who will also be representing ARMA.

So in a months time I will be off to Belgium to meet up with others from all across Europe to work on improving the lives of young people with rheumatic and musculoskeletal disorders - including the hypermobility syndromes and hypermobility related heritable disorders of connective tissue'

I don't know the details yet, but I really hope I can help create a better future for all of us, where our needs are better understood - and therefore better addressed.

Donna Wicks, CEO of the HMSA said "The HMSA is very proud that Hannah, our Patron for Young People, has been chosen to represent us at European level. Her understanding of living with one of the hypermobility syndromes gives an unique platform for her to share her experiences and knowledge. We will giving a full report on the conference on Hannah's return."

It`s a great privilege - and responsibility, and I hope that I can rise to the challenge.

Friday, 9 September 2016

Why there's no need for "I'm sorry you're in a wheelchair".

Not long ago I travelled across London by bus. During the journey I had a few brief chats with a few people, like you sometimes do on public transport. But 2 stuck in my head.

They followed the same lines: a few standard comments on the weather, roadworks, purpose of today's travel, which led into what I do for work and questions about my wheelchair and disability. Which I answered, because I felt like it, and because once we've got on to the subject of my job, questions about my disability are a natural progression - seeing as the business has grown from my disability.

Anyway, both conversations ended with "well, I'm sorry you are in a wheelchair."

Both times I felt....discombobulated.

[To discombobulate: to confuse or disconcert; upset; frustrate:]

I tried to reply. To say that my wheelchair was a) normal for me, and b) a very awesome piece of kit. The end of the second conversation was particularly memorable. Once he'd voiced his pity, every statement I made about the freedom my wheels bring, he simply replied with "Nevertheless, I'm sorry." Several times. It made my skin crawl. I fell silent. We reached his stop, and he got off the bus.

I know he was trying to be supportive, trying to be nice. But it wasn't. Just no.

Why was my reaction so strong, why was it such an alien and disconcerting concept?

Yesterday I realised the answer:
My wheels are the reason I can work. 
The reason I can get out of my house. 
The reason I can shop. 
The reason I can socialise. 
The reason I can dance. 
 My wheels are my freedom.

When someone says "I'm sorry you are in a wheelchair", to me it means "I am sorry you can work. I'm sorry you can get out of the house, shop, socialise and dance. I'm sorry you have freedom and independence."

Their pity makes no sense.

There are challenges in my life, but having the privilege of using an excellent wheelchair that suits my needs well and expands my world most beautifully is definitely not one of them. 

There is no reason to be sorry that I'm in my wheelchair.

Instead, there are many reasons to consider it one of the greatest inventions ever.


Thursday, 8 September 2016

World Physiotherapy Day: Adding life to years through Dance

Today is World Physiotherapy Day.

The theme this year is Adding Life To Years.

I often mention dance - it is something I love and my body loves and it's generally marvellous.

I am part of 'Dugout Dance' in Oxford. A group of adults of all ages (although I am one of the younger ones) and all abilities - from 'never danced before' to 'teach classes of their own'.

 (Image from the Dugout website)

I see my dance teacher (Cecilia) as "about 50" the reality is that she's....quite a bit older :D 

Some of the dancers in our group would also qualify as 'ageing' (shh, don't tell them I said that!) - for example, Alan (who I blogged about dancing with last weekend, see 'Dancing on Wheels. Together) is over 70.

And although I'm not ageing yet, I do have physical limitations which get in the way and can make me a bit more vulnerable or stop me doing things - which would make any environment with set expectations very daunting and make me feel like I've been set up to fail and constantly highlight my limitations.

In this context here are a few observations on why Dugout dance seems so effective at getting us who have limited abilities to move with confidence and joy:

1. It isn't aimed at 'ageing' or 'disabled' people. It's is contemporary dance for people. It is the dance that is the important thing, not the age. It is dance for everyone.

2. Praise, appreciation and encouragement are common - but never age or ability related. I don't think I've ever been 'complimented' at Dugout with the proviso "for a wheelchair user" nor heard a compliment tagged with "for your age". Each dancers style of movement is appreciated on its own merit, as legitimate dance rather than 'a good attempt but of course it's inferior due to your age/condition'. (OK, people probably don't actually say that, but it can feel like it's implied or subconsciously believed.)

3. Although technique is sometimes formally taught, it isn't so that everyone moves exactly the same, nor is it to 'correct' errors, it is so that we can build on our natural movement so our dance becomes better. Not about judging but about dancing. And even here, we adapt where we want to.

4. Everyone adapts. So even though your adaptation might be unique, it's a total non-issue because everyone else's is too. 

5. Instructions contain permission to be different. One of the standard phrases is "Sitting, standing or lying, I want you to....." - No pressure to do things you aren't comfortable with. Which slightly ironically makes me more likely to try challenging things - I feel secure, and if I fail it's no big deal.

6. Sitting out when you can't do something is rare. It sometimes happens due to injury or fatigue, but the norm is to adapt. Can't get down to sit on the floor today? - no big deal, sit on a chair, or stand. Feel to wobbly for jumps today? - no big deal, use the upper body to convey the feel of it, or bend the knees and then straighten them so you 'rise' - or do whatever works for you. I've even spent the majority of a class lying down because I was too tired to dance sitting up - but I was still dancing, still moving, still simply a part of the class. I have never heard an adaptation belittled. Usually they pass as an unremarked normal, although sometimes Cecilia calls out "Brilliant adaptation there!"

There was one particular time I remember clearly. I'd had a pretty rough day so was feeling quite fragile. One of our older dancers was feeling very fragile too. I pootled along dipping in and out of the dance as I felt able to. At the end we were in a circle, dancing. He sat on a chair - joining in a little. I was sat on the floor. Most people were standing. Both of us were close to having run out of energy I think - so we danced together, small and slow. Small hand movements, - connecting through arms or gentle touch, no travelling, lots of pauses in comfortable poses - still dance, and unremarked in the environment of adaptation and acceptance that is so strong at Dugout, but also dance and movement that wouldn't have been possible in the average dance class. It was dance and movement that worked for us and was totally 'part' of the wider class whilst also being very different. Still directed by the class instructions, but not dictated by them.

Perhaps that is the key. That instead of instructions being seen as laws that must be followed or you fail, everyone there feels guided by them and supported in finding their way of moving.

This gives me freedom to move with confidence and without fear of getting it wrong. Because in our dance group, there is no 'wrong'.

Sunday, 4 September 2016

Dancing on wheels. Together.

As many of you know, I dance on wheels.

Yesterday we were rehearsing a new piece, and it was a mix of people from my usual dance group and some others.

One of the other dancers was Alan, also an active chair user. I met him on my first ever dance class - which must be around 5 years ago. I don't think I danced with him personally though.

Back then I was a total novice.

A few years after that I danced with the lovely Mark Stone at the very beginning of his journey with ALS/Motor Neurone disease. It was fun. I was a little more experienced, but Mark was a novice like I had once been - I think I danced with him one of the first times he'd ever used a wheelchair.

But yesterday was different.

I am now a fairly experienced dancer. And I was working on choreographing a short duet with Alan, a very experienced dancer (with guidance from our teacher - Cecilia Mcfarlane, of course).

The first moments were awkward. I had no idea where to start - I don't think I've ever even seen 2 wheelchair dancers dance a duet. My mind was blank - I had no visual memories of dances to use as a reference point, and no personal experience to fall back on.

But quickly it became enchanting.

I was dancing with someone who's movement across the floor was in the same language as mine. And it was a language both of us knew well and loved.

I can't put the beauty of the experience into words, but I will always treasure it.