1 The stare

This blog arose out of an encounter I had with Fran. A woman stared at Fran for so long I think she mistook it for a life drawing class. This set me thinking about similar encounters we had both experienced and the impact they could have. I hope it proves thought provoking.

Have you ever felt someone looking at you out of the corner of your eye? Forensically they survey you from head to toe, as if struck by the mystery and novelty of what they see. On occasion, they attempt to do so more subtly, quickly glancing up from what they are doing, only to look away and glance back again, a second glimpse to confirm what they have seen.
Imagine it happening every day. Imagine it happening ten times a day. This becomes second nature. The choice of yours then becomes how to react. Do you acknowledge it? Do you ignore it? Do you smile? Do you perhaps strike up a conversation?

Each time you have to make an assessment. It even becomes part of your daily routine. Personally, I now almost accept that to notice difference in any form is part of human nature. The stares become second nature and in all but the most extreme cases, you move on. Over time a subconscious resistance to the stares build up and you manage your awareness of peripheral vision accordingly.

In a different context, each time we pass an accident on the motorway, the phenomenon of rubbernecking can take hold. Motorists slow to survey the scene on the opposing carriageway.Then, the traffic resumes and you continue on your journey. 

At other times though, the stares make an impact on the resistance you have. Like everyone you have a bad day and sometimes you crave annononity. Sometimes someone stares too much, and remarks just that little too loud and it is hurtful. This is especially the case on a night out. I am not drunk before I walk into the pub. 

One exception to this is children, those natural curiosity about the world causes them to ask questions. Innocently they ask what’s happened to you. Often, mortified, the parents usher their children away. 

Personally I think it is the children who have it right. The stares come from a desire to understand the difference they see. I’d rather people ask in the want to increase their understanding, than to not and still wonder. It is natural to want to know more.

In some instances it is different. Every day we have conversations with people who get to know us. That’s the real measure. However forensic the stare, there is no substitute for that.

I’ll try and resist the temptation to get too preachy here..but recent events show the importance of being able to connect with others and understand that which is different.

We can’t simply walk on by and get on with our lives, nor merely ban enquiry about that which may make us feel awkward or threatened (are you listening Mr Trump?)

It is time we moved beyond the stare (and well and truly kicked arbitrary bans into touch!).

The Paradox of being called inspirational 

I bet you thought that because I was on holiday you were safe from blogs for a bit. Far from it…my mind just finds other things to think about. Cuba is lovely and time in the heat reminds me of the value of rest!

Every so often Fran and I get told that we are inspirational. This is something I struggle with a bit. Fran is inspiring..a five time world champion..I get that..but for me I am less sure! I think that everyone is in their own way, it’s just that some ways are more prominent than others.

So the chap that called us inspirational was a great guy. He, his wife and daughter all worked in various ways within the learning disability sector in Canada. So it wasn’t a kind of patronising ‘inspirational’ which was good. This kind of inspirational, well meant as it is, is difficult. You smile and gently challenge, pointing out that we live independently and that is usually enough to make people think.

So why then is being called inspirational a paradox? For me it is because it shows how much work there is to be done whilst at the same time showing a version of what is possible.

The basis on which Fran and I are called inspirational is essentially down to the fact that we get on with life in that we:

-Both work: We’re frequently told by professionals and others that we are the only disabled people they see or know who have jobs. 

-Own our own accessible house: This is probably more down to the shortage of accessible housing than anything else! 

-Go on holidays by ourselves: Through careful research it is possible to find accessible places

So being called inspirational for these things, which I would argue are not particularly remarkable, makes me a bit sad. Shouldn’t everyone with an impairment be able to do these things? The fact that Fran and I are regarded as being exceptional for doing so shows the challenges disabled people can face. These challenges are arguably more profound and stark than ever before given the unprecedented social and personal political landscape we find ourselves in.

According to my mum (we’ve come on holiday with my parents as we’ve raved about our resort!) I under estimate how difficult my own life is. She gives the example of it taking 10 minutes to put my shoes on to illustrate this point! Maybe she makes a good one.

My standards are really high and that’s why being called inspirational fires me up. I want to keep making a difference so that I’m not regarded as inspirational any more. That’s the power that this slightly awkward and ill fitting label gives. 

So there is the paradox: Being inspirational is sad and a call to action all at the same time.  I maintain that everyone is inspirational in their own way. 

The form counselling I’m training in suggests that success is doing what we can with the resources we have. I’ll raise a mojito filled glass to that!

On being a charity trustee: Why diversity is key

This week, I was very honoured to be asked to sit on the board of trustees for a fantastic charity.  Its a progressive and innovative one whose distinctive approach makes a real impact to the lives of the people it works with.  In the last few months, I’ve been fortunate enough to find myself in demand and should all go well, this will be my third board position.  Alongside a full time job and my counselling training that means that life is busy but that is how I like it.

The role of a trustee is as important as it is valuable.  Essentially, in this context, trustees are there to make sure that a charity takes good decisions and makes a positive difference.  As a trustee, I see my role as a critical friend who is there to support and develop the work of an organisation that I am involved with.  Each position I have is interesting as it involves taking decisions in different contexts and working with others to ensure that a sound course of action is taken.

One of the reasons I have found myself in demand is my mix of personal and professional experiences.  Unfortunately, disabled people are underrepresented on boards.  I know from the experience I have had and the people I have worked with how valuable having a range of perspectives is, and its good to see that organisations are working hard to increase the diversity of their boards.  This diversity and experience allows boards to take key organisational decisions ‘in the round’ with a range of factors considered.

At the tender age of 34 I also am quite young for a trustee.  In 2010, a study by the Charity Commission found that the mean average age for a trustee was 57 years old and that two thirds of trustees were aged 50 or over.  Just 10% of trustees were aged 30-39.  It is fair to say that at first it took me a while to get used to the practice, operation and discipline of sitting on a board.  By now though, it is second nature to me.  I also have had the privilege of learning from lots of different people from all walks of life.  It feels really good to be making a contribution to helping an organisation develop.

The roles are usually what you make them too.  The formal time commitment is typically to attend a board meeting once per quarter and to prepare for this by reading all the papers ahead of time.  There is always the potential to get more involved by sitting on board sub committees that look at specialist areas too.  In return for this time and the contribution it helps to make, the potential for personal and professional growth is huge and I am now much more knowledgeable and confident as a result of my board room experiences.

Using the lived experience I have too has been helpful in raising additional issues for consideration and another set of eyes on decisions.  That’s why the diversity of representation is key: the multiple ‘ways of seeing’ issues and problem solving skills all helps to add to the mix and support improved decision making.  Debate is healthy too, and having a range of views helps to bring about that in the name of reaching the best possible solutions and courses of action.

I have been really lucky in that there has been lots of flexibility too in order to enable me to participate.  Technology is great in terms of allowing the ability to dial in and Skype into meetings, meaning you don’t always have to physically ‘be there’ to attend meetings.

So my key message is..give it a go.  Being a trustee is one of the most rewarding things I do and I would recommend it to anyone.

1 Overcoming depression and becoming Dr Chris

Yet again, I find myself in conflict as my fingers hover over the keys.  Normally when I write a blog I am decisive and it is written in a few minutes.  With one topic it is always different: Depression.  Should I even write about this?  What will people think?  Will they think any less of me?  Is it just too much to share?

When I started this blog, I had one rule in my mind: That I wouldn’t back away from anything. I wanted to raise awareness about disability issues and give people what I hoped would be a useful and thought provoking perspective on things.  Writing about depression is always an acid test.  Despite the openness around depression increasing, it is still a really hard one to confront and describe due to the questions above.

I hope that this blog, written to mark 4 years since I became Dr Chris, is helpful.  If you read nothing else from this blog, just take away that depression can be beaten no matter how bleak the situation seems.

So to set this all into context:  I have always been fortunate to be successful.  I was in my early twenties, had just graduated from Cambridge and was training for the Paralympics in London alongside working on my PhD, for which I had just won a rare scholarship.  The world was my oyster and I was on course to get my PhD before my 25th birthday.  I had a loving family, brilliant friends and a season ticket to my beloved Sheffield Wednesday.

Then though things changed.  The combination of training for the Paralympics and trying to do a PhD alongside teaching was tough.  For the first time in my life I was struggling academically.  Then a series of events knocked me for six.  I had a family bereavement, my best friend was tragically killed and I started to hide away.  I then got swine flu proper to top it all off!  Things got worse and worse.  I moved home and even my relationship with my family which was normally rock solid began to suffer.  Around that time I had met someone and decided that I was going to move in with them.  I realised that things were really bad when I couldn’t decide whether to board a plane to join my family for a few days away.  Even being on the train made me nervous and I had a panic attack.  I eventually boarded the plane but it had taken me an hour to decide what do to.

Something needed to change.  After weeks of agonising I decided I needed to go to the doctor.  That was one of the hardest things I had to do.  I was lucky in that I was ‘bad enough’ to get some time away to begin to regroup, together with some prompt help and that started the process of recovery.  Though I felt as though I was on the floor for a period of time, at the back of my mind I knew that I wanted to return to my studies.

I had a long period of counselling which gave me some great insight, self awareness and the tools to keep myself in a healthier place.  In true Chris style I did this the hard way, but I got there.  Eventually I was able to return to my studies, albeit very anxiously.  I don’t think anyone thought I was ever going to get my PhD, but in a way that was all the encouragement I ever needed.  Due to the time away, I had a revised goal, get my PhD before I was 30.

My time in counselling had given me some perspective too.  I gradually began to see the people I cared about again and to let them know what had been going on.  I had not seen some of my friends for about 3 years but put that right bit by bit.  I had also met Fran who was a rock for me and had decided to start my own business representing Paralympic athletes like Fran after seeing a gap in the market.

It was a really hard slog building up my own business and finishing my PhD, but I got there.  I hit my goal, graduating from my PhD exactly one day before my 30th birthday.  I have now been Dr Chris for 4 years and during that time have got married, held down a good job and am a trustee for two charities.  I have also found my voice via this blog and am excited by life and all that it offers.  I am also in training to become a counsellor myself, so I can use my experiences to be there for others.

One of the best pieces of advice I was given is that when all feels hopeless, sometimes you just need to let other people hold on to hope for you.  Consider this blog as a contribution in that sense.  Talking about mental health issues isn’t easy but it does help, and there is a positive way forward.

I beat depression, and you can find your own way to do so too.

The NHS ‘in crisis’: A personal account

Hello.  The recent story of the NHS being ‘in crisis’ according to the Red Cross is one that hit close to home.  The following is an account of the very real human impact a broken NHS is having on the lives of two individuals.  It won’t be an easy one to read (or write!) but I hope it provokes some thought.  It has been written with Fran’s permission and is written in a purely personal capacity and reflects only our personal views and is not reflective of those of any organisations we work for or represent in any way.

It was an ordinary day in August back in 2014.  Fran had been out and she came into the house with a crash and shouted that she had fallen and hurt herself.  Falling itself is a fairly regular event so that didn’t phase me.  However, the fact that Fran said she was hurt rung big alarm bells.  Fran has a ridiculously high pain threshold, so the fact that anything hurts usually means there are significant problems. Little was I to know just how far reaching those problems would be.

Fran said her foot hurt and could not put weight on it.  Given Fran’s pain threshold I told her that I suspected it was broken and she would need to go to A&E.  With that, she burst out into tears.  To that point, Fran had the ability to walk a few meters unaided.  When you have reduced mobility, the little that you do have assumes a tremendous amount of significance, especially when you are as fiercely independent as Fran is.

We were taken into A&E after a 45 minute wait for an ambulance as we couldn’t get into hospital in any other way.  The staff were really helpful and very apologetic for the delay.  Fran was given some much needed pain relief and we made our way into Addenbrookes.  After a long wait to see someone, we were sent to x ray and sure enough Fran had a broken foot.  No surprise there.

What to do about it though?  Having a body that doesn’t work in a typical way can cause real problems for medical professionals who just aren’t used to dealing with how that body works, or what a patient needs.  By now I was becoming seriously worried as Fran’s pain levels were increasing and even the highest dose of morphine (which it took some persuading to get) wasn’t working.  Such a dose would have knocked anyone else out but didn’t touch the sides for Fran.

The next events were critical.  The consultant on duty was called.  By now we had been in A&E for hours and Fran’s name had gone to red on the patient sheet.  A traffic light system was in use based on how long patients had been in the department.  There was a palpable sense of pressure to get something done.  What happened was that Fran’s foot was cast in its resting position, facing inwards.  Fran screaming throughout.  It was one of the most horrific things I have ever experienced.  If you have ever witnessed a loved one in pain you will understand what a painful thing it is to witness and just how powerless you feel.

The result of the foot being cast in that way was that Fran’s foot was irreparably weakened, never having been the same since.  By acting in haste out of the desire to patch up Fran and ship her out, the course of Fran’s life was profoundly altered.  Fran was referred on to the foot specialist after A&E.

In what was to become a regular pattern to this date, I then has to constantly press and battle to get things done.  The first meeting at the foot clinic was a good example.  It was the name of the consultant that was on the clinic.  The appointment that took weeks to come through, despite it being ‘urgent.’  Except it wasn’t actually the specialist we saw, it was his junior, who had no experience of dealing with Fran (the consultant had operated on Fran due to a sporting injury she had in a matter of days when she had private medical insurance as a result of her funding.  If only we were able to afford that now!) and couldn’t help.  I phoned back, complained, explaining why it was necessary to see the specialist, and fortunately this happened at an appointment a week later.

It took literally months to get anything done.   Out of desperation, I even took some money out of savings to get Fran seen quicker by the same specialist. Fran needed some more tests. An ‘urgent’ CT would take 3 months.  At this point Fran was in bits.  She was living in the lounge of our house, unable to move, let alone leave the house or work. Again, out of desperation I got on the phone.  I was able to discover that there was a portable CT machine that nobody was supposed to know about, and get the CT scan done quicker.

In the mean time Fran was in plaster and her foot getting weaker and weaker.  After a period in plaster, we fast forward about 12 months to the Christmas of 2015.  After the worst and most difficult 12 months we have ever had, we decided we needed to move house to give Fran some quality of life.  Other ways to do this via the NHS were unsuccessful.  Fran waited 12 months for an appointment at pain clinic, which she had been dropped off at by her carer.  As someone with a first class degree and a masters she is more than capable of attending appointments by herself.  The pain clinic consultant however didn’t see it this way and upon seeing Fran in her wheelchair on her own and his first words to her were “Where is your carer?”  “Hello” and the ability to engage with Fran as an individual was apparently too much to ask for. 12 months on, she is still waiting for a promised follow up appointment.

The last example of the broken system I will refer to is some experimental surgery Fran had in December 2015.  The specialist said he would try an experimental procedure to loosen Fran’s foot.  Because the foot had originally been cast in its resting weakened position it had set there, weakened and now needed to be loosened if Fran was able to regain her mobility and the independence that went with it.  Due to a cancellation, this was scheduled for the night before New Years Day.  Fran had the surgery but was unable to move and needed injections.

There was no way of organising any other help over the festive period so we had to ask Fran’s mum and one of our close friends for help.  That was the difference between being discharged and a long stay in hospital.  Also because Fran needed injections, and it would be difficult to get a nurse to do it, I had to learn to give them, which was not without difficulty given my own lack of fine motor skills. Still, as ever we found a way and Fran was able to come home.  Unfortunately the surgery did not improve things and Fran has lost 90% of the little mobility she had prior to her fall, which has been devastating to come to terms with.

I have not had the time, energy or strength to chase these things up, so things are currently in limbo.  Countless appointments have been promised, cancelled and just not happened.  It should not be a full time job to ensure someone gets the care and treatment they are entitled to  Fortunately we were able to find a bungalow that Fran is able to get around in and has recently returned to work after having her car adapted.  The house didn’t need much doing to it to make it accessible, which itself is a minor miracle, and have made our own adaptions.

So when I hear the NHS is in crisis I am not surprised.  The system is as damaged as Fran’s foot.  This is a shocking reflection on those who run the system which creaks despite the good will of those who run it on the front line.

More must be done and the system must improve for the good of patients in its care.  Ours is just one story, but I wouldn’t wish the experience we have had on our worst enemy.

2016: The Year I found my voice

Hello dear neglected blog.  Unfortunately, it has been a while since I last wrote.  This is due in no small part to the fact that I  managed to get flu proper which knocked me for six for a few weeks.  Fortunately, I’m now well and truly back on the mend and so I return to my blog, amongst other things.

It seems appropriate as the year draws to a close to reflect on my experiences of 2016.  If I had to summarise it in one theme or sentence, 2016 was the year I found my voice.  Prompted by events surrounding Brexit, I decided that this was my ‘now or never’ moment and felt that it was the time to finally write about my own lived experiences of disability, or forever hold my peace!

Since then I’ve written on a number of things, with the blog hitting the headlines after events at the Cambridge Folk Festival and a subsequent open letter.  Surprisingly, I’ve not bought tickets to the Folk Festival this year!

I hope that the blog has been interesting and useful to read.  Feedback I’ve had suggests so, which is great.  If by sharing my own experiences it helps to raise issues and provoke thought, then for me, it’s all worthwhile.  That’s not to say that we’ll always agree dear reader, but I hope we can engage in discussion and debate, learning from each other along the way.

Finding my voice has underlined for me the importance of clear communication and dialogue to address social issues, and those around disability in particular.  In the challenging times we face, collaboration to find solutions to the difficult matters we face becomes all the more important.  Linked to that, one of the great things during this year has been serving as a trustee for a couple of charities and working to set up a regional group.  I’m passionate about charity work and what I have learned as a trustee has provided an invaluable insight into some of the issues third sector organisations face.

Whilst my experience is but one of many, I’d encourage those of you who have the opportunity to sit as a trustee or in other representative positions to grab it with both hands.  This is especially the case if you come from a group that is traditionally under represented in board room situations.  I’ve now found myself in demand due to the value of my own lived experience and the perspective that this offers.  I’m always glad to be of service and hopefully make a positive difference in the process.

The flip side of having a voice is the ability to listen, and listen well.  This has been one of the great things my counselling training has taught me.  Being able to listen well is fundamental to good communication, especially when it involves dealing with difficult issues.  Here’s to more good listening next year too.

Looking ahead to 2017 there are both challenges and opportunities.  Lets all  find and use our voices so we can work together to achieve progress and help the world work for us all.  As neither Fran nor I have sent Christmas cards this year (donating the money to charity…) may I take this opportunity to wish you all a very Merry Christmas and all the best for 2017.

Chris

Attitude is (almost) everything

In the slightly less glamorous location of my office, and feeling decidedly colder I write my final reflections on a great trip to Las Vegas.  This time I want to focus on the importance of the attitude taken towards dealing with impairment and the difference it made for us.  For me, I think attitude is almost everything when dealing with impairment.  Barring being offensive, if the attitude is right, I think the rest follows on and it certainly proved to be the case for us in Las Vegas.  

In a previous blog I wrote how being treated as a consumer made a real difference to how our holiday felt and how we were able to experience more as a result.  Simply put, following on from that consumer treatment, the people we encountered started with the attitude that nothing was a barrier.  To give a simple example, when we walked into a show, our seats were originally meant to be down some steps, which were inaccessible.  Within a matter of seconds, we were shown to an alternative position, with an apology.  No fuss, no nonsense, no head scratching, just a ‘can do’ attitude and a simple solution.

By contrast, when we arrived back to the UK, the wheelchairs had not been bought up from the luggage carousels to the plane.  After much enquiry, no solution could be found so we had to suggest going down to collect our belongings.  Not such a great attitude and not the best welcome back to the UK.  Now it could be said that I am comparing apples and pears here but I am trying to show how approaching issues that might arise it is attitude that is key.

In another example in Vegas, we booked airport transport, which can be a complete nightmare.  The Supershuttle, however, lived up to its name.  There was an option to book accessible transport on the front page. Easy.  I didn’t have to call, just tick the box and make the booking.   The taxi turned up ahead of time and had all the adaptions needed and off to the airport we went. I’ve not found it so easy in the UK, far from it.

Now, there are some great examples of good practice in the UK.  My point however is that the attitude we found in Vegas was everywhere and not a shining beacon.  We love visiting America because of this attitude and lament the fact that it just isn’t the case in the UK.  With the right attitude and by starting with a solution (as opposed to merely observing a problem) then life with an impairment in Vegas was easy, fun and so much more accessible than it tends to be over here.

I am not saying everything is perfect, but with the right attitude, so much more can be accomplished and experienced as a result.  The impact?  Everybody wins.  I’m already looking at booking our next trip!  Now if only the casino machines had been a little more obliging…!! 🙂

The US election and lessons to learn for UK politics 

I don’t normally blog about politics but it’s something I feel really passionate about and I’ve even toyed with the notion of trying to become an MP one day. Political policy has the capacity to directly shape every aspect of our lives which is why having good people in power matters.
While I’ve been in Las Vegas I’ve been struck by several things about the Anerican election and what it means for us. 

1. The need to have good candidates and choice: Quite how Trump especially has even been allowed to get here is beyond me. Politics is only as good as the quality and qualifications of those involved with it. If I were an American voter now I’d really feel as if I was between a rock and a hard place with my vote. Where is the good option.

2. Politics needs to connect and stop apathy winning: Much of what I’ve seen in the coverage has been meaninglessness for me. High on petty points scoring and short on substance. Politics needs to speak to all of us and provoke informed debate. I predict what we will see in voting is a continuation of low turnout, which is bad for everyone.

3. The need for a more inclusive approach: I’m struck by how incestious American politics appears to be. Bush or Clinton appears to mean you have a lifetime in politics and this needs to be shaken up. Likewise in the UK, it shouldn’t just be about Oxbridge educated, middle aged people with money. We need a range of views to make politics speak to everyone.

4. More solutions and less negativity: We live in challenging times. This means the need for solutions to our pressing problems is required more than ever before. Negative attack ads over here are so abundant and do nothing to offer the solutions we all need.

5. The importance of objective and informative media coverage: Watching media coverage over here I am so thankful for our broadcast media in the UK. The bias of the likes of Fox, and even CNN is astonishing. We need objective media coverage to highlight issues, ask questions and bring politics to life.

The closing days of the contest for the Whitehouse will be absorbing. The winner of the contest will impact us all in many ways. Make your choice with care America.

2 Reflections on experiences of America with an impairment 

This has to be one of the more surreal settings I’ve written a blog in. I’m sat in the middle of a noisy Las Vegas casino surrounded by sirens, bells and in a haze of smoke.

I’m conscious that I’ve had something of a blog draught of late. I’ve not felt moved to write about anything and only want to do so when I feel I’ve something of interest and (hopefully!) value to say. Thank you to those of you who have enquirered when my next blog will be.

The purpose of this blog is to reflect on my personal perspectives of America as a tourist. Over the past few years I’ve been fortunate to visit Vegas (twice), New York and Florida. So whilst this doesn’t claim to be a scientific study I’m confident that I have a range of experiences from which to draw.

The good: Being treated as a consumer and the impact this has

I think the American attitude I have encountered is ahead of the U.K. for one simple reason: Here I am treated as a consumer and services are easier to access as a result. The consequence of this is that life is a lot more accessible. Granted, as a tourist I may be more outgoing than on a day to day basis but it’s definitely easier to get about. So there is a positive social by product..I can do more and see more as a result.

It feels as if America has embraced the social model too. Buildings are adapted to allow access so that as a consumer I can get in and spend my money. Though it is a subjective thing it feels a bit easier to walk tall as a result. My money is as good as everyone else’s!

Though much has been written about the purchasing power of the ‘purple pound’ in the U.K. I think we lag behind. Fundamentally, I would argue that disabled people aren’t generally seen as consumers and marketed to in the way that other consumer groups are. Sport aside, disabled people tend to be discussed as passive recipients of state welfare rather than as active consumers. That can (but not always) filter it’s way though to social  and even political contexts as a consequence.
The bad: Insurance and healthcare

The consequence of being seen as a consumer has its negative side too. Insurance and healthcare is very much a product here and that has profound implications for someone with an impairment.

Getting insurance to travel to the states can be a mission. Every day life in the states would be impractical. I just couldn’t afford it. The health system appears to be very much a live issue in the election debates.

For the well documented pressures and shortcomings of the NHS in the hands of its political masters the principle of free healthcare to all at the point of need is a game changer and one we must retain.

I dread to think about the adoption of an insurance based model and its negative consequences in the uk. 

As with so many things, I hope we can retain the positives and learn from the attitude described above.

I had better go and find my long stuffering wife and go and embrace my consumer status some more!  

Lived experience of impairment and its value

A lot of my conversations, both personal and professional of late, have revolved around the importance and value of lived experience of impairment.  Growing up, I learned about the importance of being able to articulate the impact my impairment had.  If I couldn’t explain it, then I couldn’t help other to begin to understand what it was like to be me, and the kind of extra support I did (and, equally significantly, did not) need.

As I got older, I became aware that my impairment effectively gave me a ‘way of seeing’ that wasn’t familiar to lots of other people.  The things that were obvious to me because of living with my impairment and working around things just weren’t obvious to other people.  A good example of this was when I looked around universities.  I was often asked to go around with university staff to point out access issues that they could address to help ensure that the campus environment was accessible.

These days, I am lucky enough to sit on a couple of boards as a (voluntary) director and trustee.  A combination of my personal and professional experience means I am in the fortunate position to be able to add a different point of view, to constructively challenge and be a good critical friend to enhance the work of the organisations I am involved with.  This poses a really interesting dynamic to me, because one of my worries is that I should not be in roles like this for tick box or tokenistic reasons, but because of my blend of experiences and what I can bring.

I am aware though that there are lots of people out there who have a great deal to offer, for whom the nature of being on a board isn’t accessible.  I think much more work is needed to give people the knowledge, skills and tools in order to be able to make a difference using their own experiences.  The best things I am and have been a part of are those which are able to use a blend of knowledge and perspectives to give a thorough and holistic assessment of the decisions to be made at a boardroom level.

It is also really important to acknowledge the diversity of impairment and the impact that it has for people.  To take my own impairment of cerebral palsy as an example, there are different types of CP and the degree to which it can impact on the lives of people who have it can vary enormously.  This means that I always try to speak with care when talking about impairment, as I can only speak with authenticity about my own lived experience, and there will be many other different takes on things out there.

I really enjoy being able to use my own lived experience to help add value to the things I am involved with, and would encourage ways to make it possible for more people with a contribution to make to do the same.  Having a holistic and inclusive approach to decision making will improve the quality of decisions made and the way organisations function in society.