1 The Hardest decision ever? Approaching parenthood with an impairment

So here we are again.  I’d like to start this blog by paying tribute to a family member we’ve lost over the last few days.  One of the many pleasures I have had in being with Fran is getting to know her side of the family.  I’ve gained a fantastic mother in law and two brilliant brother in laws too.  Fran’s extended family is a great bunch too.  Uncle Bob was a great man.  Kind and gentle, he was also one of Fran’s biggest fans.  It was his work that led to Fran getting awarded a fellowship by her hometown university in Sunderland.  I will never forget the look of pride on his face that day.  Rest in peace you brilliant man.

It is partly the events of the last few days that have set me thinking about arguably the hardest call I’ve ever had to make: To try and become a parent with Fran or not.  I’ve previously referred to the fact that I am broody and daunted – and this very much continues to be the case.  Trouble is, I can’t decide what, if anything to do about it and am torn.  I have written list after list, I have talked what seems like endlessly with Fran and my family about it and yet still here we are.  Time ticks on, and will eventually make the decision for us.

It feels like a case of acting in the near future or forever holding my peace.  Whenever I think about it though, excitement and fear grips me in equal measure.  In writing this blog, I’ve spoken with my Sister, who has taken to motherhood like a duck to water and has bought endless joy to all of our lives in the form of our Niece, Lucy (hi Lucy!!).  So I have experienced the love and happiness she has bought, but I have also seen the chaos too.

Fran and I are lucky in that we are used to negotiating challenges and quite literally defying the odds.  That said, having a child would be a real practical challenge.  I say practical challenge as I know we could offer an environment full of love, support and nurturing where our little one could flourish.  What about the practical stuff though.  Could we even have kids.  What about social services?  How would we deal with the challenges from people who felt that we shouldn’t be having kids at all.  Will these challenges even exist, or am I making them up in my head.  These are just a few of the thoughts that run through my mind whenever I think about this.

That said, I know we would be great parents.  I just know. We have such a lot to offer, and pass on and I hope that it would be one of the best things we would ever do, if we were lucky enough to have the chance.  I also know that this decision is daunting for anyone, let alone where impairment related issues can throw a few extra curve balls into the mix.  It is done though, and there are lots of fantastic disabled parents out there who have shown that all of this is possible…and if that is you, I salute you.

Still there is the fear.  The what ifs.  Maybe all of this thinking just means I am prepared for the challenges that might lie ahead.  Two things stand out above all.  1. I know we have a shedload to offer (many people comment how the child will have a tough act to follow..one parent is a world champion, and the other…well..he just has lots of pieces of paper…!!:)) and 2. I don’t want this to be the only thing that we’ve not done because our impairment has posed a barrier.  I have come 34 years without that problem, and I don’t want it to start now.

I hope you don’t mind me thinking out loud, dear reader.  This is the hardest call I’ve ever had to make after all.

Personalisation: The Illusion of Choice?

Dear Reader,

I’m aware my blogs may seem a little melancholic of late.  Rest assured, I have the ‘Get Home Happy!’ playlist on Spotify in full flow as I write this.  I’ll refrain from swearing at this early juncture, but recent reflections and experiences have shown me how profoundly difficult life can be for disabled people.  I raised my eyebrows when I received my council tax breakdown today, and my statement showed that my local council had allocated a grand total of £41.04 to address the frankly calamitous state of social care.  That won’t even touch the sides.

So we have the suitably austere backdrop painted out nicely.  If this was a holiday, we’d certainly not be getting 5 stars on trip advisor, and it would almost certainly be raining with stormy skies ahead.  Your protective umbrella would have already blown out too.

I’ll give you some context to this blog.  The theory behind personalisation is fantastic.  It is designed to cut out the middle man and give disabled people the ability to decide how money is spent for meeting their own needs.  The Department of health defines personalisation in the following terms “every person who receives support, whether provided by statutory services or funded by themselves, will have choice and control over the shape of that support in all care settings.”

Choice and control.  Empowered to exercise ones own judgement.  All seems good in theory.  What about in practice?

Not so fast..the lived experience of this disabled person is the ‘choice and control’ exists in name only.  Worse, you are given the responsibility for administering this as social services just don’t have the resources to do this now..So how is personalisation operating in practice?

My latest joyful experience has involved helping trying to get Fran’s wheelchair replaced. Where was the choice?  There wasnt one, not a real one.  You use the designated provider, or you fund it yourself. Brilliant.  A wheelchair is one of the most important things that exists in the life of a person who needs one.  In cases of people who use them full time, they are as good as your legs and the only means you have to get around.  You can spend as much as 12-16 hours a day in one, 7 days a week.  Having one that meets your needs is vital.

The private sector provider of the service locally (which has a notoriously awful reputation, despite ‘improving’) has taken about 6 months to even assess Fran and we’re still waiting.  The range of wheelchairs Fran is allowed to have is very limited (again, no genuine choice here) and its either that or nothing.  It’s another example of a great idea being hacked apart and bought into disrepute by people who have no empathy, understanding or frankly clue about how to meet the needs of disabled people.

Add to this the restrictions on how the pot of money that personalisation can be used for being increasingly and ever more tightened and the picture of choice being an illusion becomes all the more graphic.  What a sad way to treat a brilliant idea.  Disabled people are again given the short straw as a result. Not even the ‘get home happy’ playlist can do anything to address that.

Every Day Disability Hardship and the glass ceiling

Today I write on the topic of every day disability hardship.  Across my life I have noticed a kind of paradox of late.  It is a kind of impairment based glass ceiling.  On the one hand, life seems to be more accessible than ever before.  The opportunities are greater, technology helps to make things easier, employment more flexible.  The possibilities are there.

Scratch the surface though and you’ll see people hitting the glass ceiling every day.  Just in my life of late, I know three people who have been adversely impacted by the continuing cuts that are having a debilitating impact on the lives of disabled people. Thankfully we are emerging from winter, a time which can be harder for many people as the cold exacerbates their impairment(s).

In each of these cases, people had their cars or other means of transport taken away from them.  These are people who already buck the trend in holding down jobs.  In order to get to their jobs they need reliable, accessible transport.  The impact of their transport being removed is that they can’t get to work.  They can’t get to work so they can’t pay their taxes and make a valuable contribution to society in numerous other ways.  These are people with specialist skills and abilities whose capacity to use their lived experience of disability in conjunction with the technical expertise they have makes them priceless assets in their respective fields.

I really loathe this analogy, but it feels like there is a war going on for disabled people.  A war where they have to fight to do the everyday things on the one hand, and are being compelled to have to justify the help they need to live their lives on the other.  Even more depressing, it feels like a war that is being lost.  I’ve also been aspirational in referencing employment.  There are those people for whom getting up and out of bed is an achievement.  As i’ve discussed before, Social Care is on its knees so even just doing the everyday basics is a feat in itself.

It saddens me to be this negative.  In my various guises I often hear requests for more time and money to make things happen.  In this instance that would undoubtedly help but I think the issue is an even more fundamental one: Try actually understanding the needs of disabled people, to understand the issues they are facing.  This understanding is something we are light years away from and which is badly needed.  With such an understanding the true impact of this war and the everyday casualties it is taking can at last be understood.

Every day I see people who are just trying to do their best, who want to contribute in all manner of senses, but who are unable to do so.  These people are tenacious, talented people whose resolve is being grounded away by the barrage of issues that face them.  If this is the case for those who have had the stomach for a fight, i’ll leave you to imagine what has happened to those who do not or are no longer able to.

As for me, i’m fired up.  The ceiling is glass which means it will be smashed.  I’ll keep working and writing and winning so I can show that there is a way ahead.  Every day disability hardship won’t count me as a casualty.

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…!! 🙂

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.

A post Parlalympics void to fill: From Rio to where?

The time following an Olympics and Paralympics is hard.  After gorging on sport for a month and experiencing every moment of drama, success and agony..there is a big void to fill.  Real life resumes and as the nights set in, the autumn cold begins to bite.  In terms of the Paralympics, it is fair to say that things went even better than even the most optimistic accounts would have suggested.  Talk of the troubled build up set aside as Paralympics GB surged up the medal table to remain in a lofty second spot.

A well earned word of congratulations must be extended here, not just to the athletes who performed so well but to the coaches, support staff and family members that helped create the conditions to make those medals possible.  Without such a ‘team behind the team’ we wouldn’t have anywhere near as many medals to celebrate.

The challenge now will be to sustain that progress in a Paralympic playing field that is becoming ever more competitive. New strategies will be have to formed in order to find medals where they have not been forthcoming and the funding and innovation so central to success will have to be renewed.  For this, there will also need to be a strong political appetite at a time when the public purse is shrinking.  I may well be utterly biased, but I would say that this is one area where funding should be retained and investment to continue.

And herein lies the rub..where do we go from here?  The answer must be in continued hard work, not only at the elite levels, but at grass roots to develop inclusive sport and physical activity, and to continue to address the cultural, structural and practical barriers that continue to stubbornly exist.  That, for me, would amount to a legacy from Rio to be proud of.

The ‘legacy’ must happen in every day life too.  Disabled people live their lives in particularly challenging times.  Success too from Rio would look like every day life getting better for disabled people everywhere. This may sound a bit utopian or idealistic, and I would agree, but we have to continue to make strides forward and recognise the challenges that exist (which are numerous) and the benefits of overcoming those (which are priceless in so many ways).

As the focus of the media switches its gaze the hard work must go on to make these things happen not just once every four years but every day.  Just as with the dedication that is required to represent ones country, the work needed to offer constructive solutions to complex problems will require leaving no stone unturned and thinking of every positive route to solutions.

Time will tell what the future holds, but progress is possible, and we all must (continue to) do what we can to build on a great summer.  With energy, dedication and enthusiasm, the autumn cold will be kept at bay.