Category Archives for "Disability"

2 Why talking about disability is essential: Freeing my ‘imprisoned’ self

When I am blogging, I have three simple rules.  The first is that I must write the blog in 30 minutes.  Second, that the blog must be no longer than 500 words and third that I must be making a clear point.

I fear that in this post, I may break the first two of these rules, so apologies in advance dear reader (blame my past as a law student and criminologist – I spent years studying how rules are broken!)  For the avoidance of doubt, my clear point is this: that is it ok to talk about disability.  This was partly what was behind the very title of this site…I wanted to ‘speak out’ and finally had the means to do so.

This wasn’t always the case though.  For years, I kept my disability in an invisible (yet tangible) prison.  It was there, and I could see it, but I didn’t know quite how to talk about it.  I’ve done some reading about this lately and in his earlier work, academic Tom Shakespeare makes a reference to ‘coming out’ in terms of disability, and from what I do know, there are parallels.

For me though there were two big turning points.  A first was going to school.  I’ve spoken a lot about education and inclusion in the past, and when I do, I say that it was really down to me to talk about my impairment and how it impacted on me. If I did not, I couldn’t help other people understand it and the impact it had.

As I got older though, I started to build a few walls around talking about it.  Ironically in some ways I became really reluctant to talk about my impairment and felt really awkward about it, more so than other people in some ways.  Fortunately in some ways, as I got older in school and more familiar (some would say stubborn!) in my surroundings, I just became increasingly focused on school results, girls and other typical teenage pursuits.  I moved away from anything to do with disability, fearing that involvement would lead me to being ‘pidgeon holed’ and I didn’t want that.

The imprisoned space got really big, all thoughts about disability and talking about it openly locked away.  Something for my private thoughts.

However, then came my second turning point.  Before I met Fran I hadn’t dated anyone who had an impairment.  She changed all that.  When we met (we both have cerebral palsy) it was as if there was a deep understanding that only someone who had the same lived experience could know about.  The nearest example I can think of to convey this is sport related.  Think of it like both following a football team.  You understand how much to support that club means and what it is all about.  Nothing else like that understanding ever really comes close.

My ‘imprisoned’ self was freed.  Even creating the blog and writing a post like this as recently as a couple of years ago would have been unthinkable.  Now, I want to use my own lived experience of disability in a positive way to help break down barriers and increase understanding.  This was why I created the blog, and that is why I would encourage everyone to talk about disability and learn more.

It is also true to say that for me, my disability isn’t the sum total of my identity, and nor should it be.  It is part of who I am.  Just as I have released my disability from prison, I won’t allow it to imprison me now. I’ll always try to maximise the things I can do, whilst acknowledging the limitations I have.  But then, who is limitless?  If you are, then I want to meet you!!

Prison isn’t ever a space for something as important for disability to be.  Keep it out of prison and let us all keep talking about how we can get along together.  Talking about disability is not in fact just ok as I said at the outset, but is essential.

A historic day for Paralympic Sport

Today is a historic one for Paralympic sport.  Minutes ago, the International Paralympic Committee announced that it had suspended the Russian Paralympic Committee with immediate effect for violations of anti doping regulations.

This decision stands in direct contrast to the International Olympic Committee (IOC).  Here, decision making was delegated after the IOC, in my view, effectively ducked the issue and passed the buck to individual bodies.  Why could the IOC not take this stance?

The tone of the IPC statement was surprisingly strong, with Sir Philip Craven saying that a “medals over morals mentality” “disgusted” him.  The decision was a unanimous one.  It was also fair in my view, that extra samples were tested and that dialogue was sought with the Russian Paralympic Committee over several hours of meetings.  These steps of ‘due process’ and administrative good practice may also curtail efforts to have the ruling overturned.  

No doubt Russia will appeal in due course.  Given the strength of the statement issued by the IPC and the extent of the issues uncovered, it will take something very compelling for this ruling to be overturned.

It is no less than a defining moment for Paralympic sport as a whole.  A bold, (and some would say controversial) stance driven by an unwavering commitment to clean sport.  Whilst personally, I do sympathise for the Russian athletes who did not cheat, this decision safeguards the wider matters pertaining to the integrity of Paralympic sport as a whole.   The pressure that the IPC will have been under, whatever the decision taken, should also be remembered.  All of this makes the leadership and strength shown commendable.

A message to the rest of the world is also clear.  Paralympic sport can stand independently of the Olympics, and functions to its own standards, beliefs and values.  The IPC now must continue to take this stance in other areas of the work it presides over, in order to ensure that the integrity and fairness of Paralympic sport runs throughout.  There will still be issues for Paralympic sport to address, but the measures taken today shows the capacity exists for them to be successfully negotiated.

Hopefully we can now look forward to a Paralympic Games in which, unlike the Olympics, does not have a shadow lingering over it.  When the world watched, the Paralympic movement delivered a verdict that did justice to the athletes who will legitimately be representing their country.


The power of words and ‘speaking out’

Its been an interesting few days to say the least.  On Saturday morning, I wrote about an incident involving Fran and I.  It was then picked up by a few people followed by a response in the form of an open letter to ‘John.’

Since then, unbelievably, those blogs have been read by literally thousands of people from half way across the world.  It wasn’t something I expected to happen.  Today, thanks to some brilliant support from my lovely work colleagues, there was some press interest.  It was one of those rare instances where my personal and professional lives became intertwined. Tomorrow, there is more press…so i’d better write up this blog promptly!!

Where does all this leave me feeling?  Partly still a bit conflicted.  I’m still reflecting on what happened.  Partly that annoys me..why should I let it get under my skin so much?  I think that this annoyance also shows two more things. Firstly, that I have lots more to learn about everything in life. Secondly, there is a long way to go in terms of disability equality too.

Above all though, I’m taking it as a positive thing.  It’s been a way to raise awareness about disability and get people talking and thinking, which is good.  Fran has taken it all in her stride, and has seen it in a similar way.  She’s a real rock for me.  I’d be lost without her..though that’s between you and I! 🙂

Another important thing is not to dwell on negatives.  Life is such a precious thing that it doesn’t do to overly focus on the past.  You have to dust yourself down, get on with it, moving forward with your head held high and the positive lessons learned.  I also tweeted about resilience, and its important to have that too.

It has also made me realise a few things i’m not.  I’m not defined by my disability (its a part of me, not the sum of me), i’m not wrong to speak out, and i’m not the only one.  I have got lots of messages from people who have has similar experiences (and far worse in my view) so we have to keep talking.  It is through difficult (sometimes painfully) honest conversations that we’ll make progress.

Speaking of progress…if this humble blog can ‘go global’ it also shows the power we all have to reach others – and the importance of speaking out.  However daunting it may seem, don’t be afraid to do so. You never know where it might take you, and how it can positively impact on others. I’d encourage you, dear reader, to personally speak out too 🙂

Lastly..thank you.  I have been overwhelmed by the kindness, empathy and support that has been sent in our direction over the last few days. The support is genuinely appreciated, and the difference it makes massive.

Wishing you all the best for now dear readers..until next time 🙂

2 An open letter to the man who called me a ‘window licker’

Dear ‘John’,

I don’t even know your name but I really wanted to write to you and tell you how I felt after our conversation last night. Your use of the words ‘window licker’ to describe my wife and I was deeply, deeply hurtful. So much so, that hours after you use those words, I’m still sitting here and thinking about them. That’s not right.

Let me tell you about my wife and I. After all, it’s only fair you know about the people you judged in that way. My wife is called Fran. She has a first class degree.

Fran has also studied disability issues in her masters (she has 2 degrees) so she understood how awful that term is. It’s use implies that we shouldn’t be out and about and living our life in the independent way we try to. It is actually one of the first times Fran has been out of the house in two years to a social event as she’s been having really bad problems with her foot. So it’s a knock for her at an unfortunate time. 

Despite that, she’s still been able to make a difference for other disabled people. She works to do that every day. She doesn’t normally let things like last night impact on her, but she was visibly shaken after last night.  

As for me. Thankfully I didn’t really take in what you said until after the event. As for me. I might seem a confident person, and I am in lots of ways. Remarks like yours however, have a lingering, corrosive effect on my confidence. Friends have contacted me since I shared what you said to us saying they would have been devastated by that remark. Others have said to report it to police as a hate crime.

I’ve not yet. Instead I contacted the festival and praised them for the good things they do. I also offered to work with them in the future to make sure that people understand the damaging effect that words like that can do. Hopefully, that’s a way that a postive outcome can come from a really horrible situation.

The words you use, and the implication that we shouldn’t be out and about, is also upsetting. Imagine if someone said that to you. How would you feel. Now imagine it’s made harder because you have a disability. Now how would you feel? Imagine that was your mum or sister or brother and someone said that to them. 

I wonder if you’ve thought about what you said again last night. Whether you have or not, I hope that this letter helps you to think about the power of language and your actions.

Above all, please don’t judge a book by its cover. Each person you see is a complex combination of things that you can’t dismiss with the kind of words you use. Think about the person you impact upon, disabled or otherwise. 

I hope that nobody subjects you to the kind of thing I’ve described. Hopefully you’ll even take this as a moment to reflect and think twice. 

Enjoy the rest of your festival, as we will try to, and treat others as you’d like to be treated.

Best Wishes,


5 On being called a ‘window licker’ and what to do about it

Fran and I were coming home from a great day at the Cambridge Folk Festival yesterday. It’s our second visit here. We came last year and found it to be really disability friendly. It’s a compact site with good access and it’s quite easy to get around. We also found the staff to be brilliant and the atmosphere really chilled.

Last night however, we were coming home and called into the festival tent to get a programme. As we were walking away there was a reference made to us being ‘window lickers.’ Luckily at the time I didn’t realise what was going on but Fran most certainly did and was shaking with rage. She finally explained to me and I was livid.

Thankfully, situations like this are still relatively rare. We’re used to being stared at when we go out and about. Human nature is that we focus on difference and that is fine. However, the incident described isn’t. 

Situations like this though always make me feel conflicted. I hope by now dear readers you’ll have read a few blogs and realise that we try to get on with life and make the best (and most!) of it.  I have a worry about not being a person with a chip on his shoulders and sometimes you just have to rise above it.

Posting what happened on Facebook drew an instant reaction of shock and empathy from my friends. So do I report it? It’s also important to emphasise that the festival as a whole is brilliant, as are the staff. Do I just put this down as a rogue individual?

Is this ignorance on the part of the individual? Were they trying to be malicious, funny…? Is this ignorance (if that is what this is) so ingrained that reporting it won’t change anything?

I raise all of this to help highlight the issues that sometimes are faced, and the questions raised. I’m still not sure what the answers are.

Two things are for sure though. We won’t let it spoil the festival, and we still have our heads held high.

N.B. This is a much shorter blog than normal as I typed it on my phone! Apologies for any poor spelling or grammar!!:)

Update: Since this blog I have spoken directly with Folk Festival staff. They were v apologetic. I have also offered to engage with the festival longer term on disability related issues, which is a positive outcome:)

Disabled people: ‘second class citizens’ or ‘superhumans’

It is an interesting time to be a disabled person.  Lately, I have been told I am a ‘second class citizen’ by the Equality and Human Rights Commission, whilst disabled athletes have been portrayed as super human.  Meanwhile, shouty disability campaigners DPAC tell me that welfare to work companies are out to get me!  What am I to think?

For me, it comes down to two things: context and nuance.  Of all these representations, my own personal lived experience (I can’t speak for anyone else!) is that the reality is somewhere in between.  Context is really important.  Similarly, nuance tells us we need to take care to look at the broad spectrum of disability and the experiences that people have, and that ‘one size’ doesn’t fit all.

In reality, am I a second class citizen?  Generally it doesn’t feel like it.  It is true to say that life can be much harder,  I have to be good at problem solving, and find workarounds to things.  It is also true to say that as someone who is working full-time and owns their own home, the impact of austerity policies like the ‘bedroom tax’ hasn’t really been directly felt.  I know that this isn’t the case for everyone though.

Am I a super human?  No.  I should declare an interest here though as someone who has been involved with disability sport for a long time, and who is a passionate advocate of it.  The super human tag is a bit of a mixed blessing for me.  On the positive side, it promotes the positive abilities and capabilities of our world-class athletes, of whom we should rightly be proud.  However, not every disabled person aspires to be or will be a Paralympian.

In terms of the assumption that every disabled person is a Paralympian, let’s think about this for a second.  Applying this logic  would mean that, for example, everyone who played football, at whatever level, aspired to play in the premier league.  This is simply not the case, and would neglect that people play football for a wide variety of reasons in a wide variety of contexts (there is that word again!)  Similarly, I wouldn’t expect every person who was not disabled, to aspire to be an Olympian.

A much wider exploration of disability, to harness the positivity around the Paralympics, is needed.  To explore how each person can be able to be the best version of themselves and achieve their aspirations.  There is much more to be done to address this, and to examine the various ways in which disabled people can reach their potential in all areas of their lives, be that work, love, travel or whatever else.

Lastly, I must turn to  so called disability rights activists.  Are people out to kill me?  No.  Does campaigning which purports to speak for all disabled people, and in reality speaks for a minority help me?  No.  There are some of these so called ‘campaigners’ that present a really distorted view on disability.  One driven by bitterness, negativity, frustration and quite frankly, having a chip on both shoulders in some cases.  Is this the kind of thing we really need to help take disabled people forward?  Not at all.  Much more balance is needed, to carefully assess and address issues.  Do things need addressing?  Of course they do.  Making shouty, hyperbolic claims just isn’t the way to go about it.

So..i’m neither a second class citizen or a super human.   I’m not a shouty disability rights activist either.  I do though try to negotiate life in a constructive way and try to focus on the positives around disability, and life in general.  I’d encourage you, dear reader, to do the same.

“How do you have sex?”..and other questions to avoid

I read an article today that made me think about my own experiences.  The article, 9 things you should never say to a wheelchair user, had some real classics in it.  I should say that it’s not often that people will comment directly about my disability, but when they do it is usually quite memorable.

I’m often asked what is the right ‘etiquette’ around a disabled person.  For me, it boils down to four simple things:

  1. If you wouldn’t ask a friend it, then it’s probably best not to
  2. If you wouldn’t like or expect to be asked it yourself in passing then don’t
  3. Treat others as you’d wish to be treated yourself
  4. Don’t be scared around disabled people

The eagle-eyed (no political puns today, promise) reader will note that I said ‘in passing’ above.  Of course, if invited somewhere to talk about disability specifically then I’d discuss it.  In fact, i’d generally encourage openness about disability and will generally answer most questions, in passing or otherwise.

However, there is a time and a place!! 🙂  I vividly remember one day when I was in Sheffield and a religious person said he wanted me to confess my sins and be cured.  Now I know my way around a bible, so an animated debate around his right to a) make that statement, and b) know that I had sinned, followed.  I’m normally quite relaxed, but this guy happened to catch me on a bad day (we all have them!) so got very short shrift.

If you want to be funny, try stand up comedy.  If you want to become more informed, start a conversation.

The other question I get asked is: what my sex life is like.  Now that I am married to my lovely wife I get to have a bit of less fun with this one(when I was single my responses used to involve a subtle invitation to find out more!).  But yes, people still ask, and yes, it’s still great, thanks!! Quite where that question sits on the 4 guidelines above I’m not sure.

I’d welcome more thought and engagement around disability.  I used to be scared of it myself but then meeting my wife Fran (who is herself disabled) gave me a bit more confidence to be ok in my own skin. Don’t be scared around disability, just ask genuine questions out of a desire to know more about those who are in the world with you.  Beyond what i’ve said above, there really are few right or wrongs.

Making the odd ‘witty’ remark in passing isn’t the way to go about it though.  Particularly if humour is borne out of fear, or worse still i. If you want to be funny, try stand up comedy.  If you want to genuinely become more informed, then start a conversation.


2 Feeling broody. And daunted! 

Having a child. Daunting and scary at the best of times. Throw in both parents having a disability and the plot thickens. Whilst away, I like to use the time to reflect on my life, the things in it and how they are going. Last night, I was struck by a thought, which I expressed to Fran:

I thought about going to the cricket and the football as dad has with me. I want someone to go with. I may not know everything but I’ve got some good stuff to pass on and want to do so

It’s something we’ve contemplated for a while. My sister gave birth to my brilliant little niece last year and it’s been a privilege to be a part of the joy, richness and fun that she has bought into our lives.

I’m told that having your first born is one heck of a mission though. For us it would be that and then some. We’d need full time support for the first few months, and a well oiled operation to see us through.

Writing this, I’m also aware that some people might question our practical abilities as parents and even the fairness of bringing a little one into the world. I get that, and see why people would but I would respectfully disagree. There is no doubt in my mind that we can provide a safe, happy and healthy environment.

All of that isn’t to say things aren’t daunting though. I’ve always said that being a parent is the most important thing that I’d ever do if the opportunity ever arose. We’re also lucky to be in a position to be parents though, all things being well.

We have a social services review coming up and it’s one of the things we intend to discuss. Doubtless social services will take a keen interest in our plans. We’ll be closely assessed. There is that to be ready for too. 

What I do know too is that we’re resilient and resourceful. We’ll also be absolutely surefooted in our decisions, and supported by a wonderful family and friends. 

We shall see. For now, I’m just feeling broody and daunted!!:)

Accessible housing and the difference it makes 

About 8 months ago, life wasn’t great. In our house, things were getting increasingly hard. Fran was off her feet and couldn’t get upstairs so was confined to the lounge. The rest of the house inaccessible.

We needed to move. We needed a bungalow. We were fortunate to be able to put our house on the market and that the offers came rolling in swiftly. Now just to find that bungalow.  However, they were in all too short a supply where we lived. We were going to need to move away.  It was really hard to leave an area we knew well, with a local support system, not to mention the house we had our post wedding celebration in, but needs must.

It was really hard to leave an area we knew well, with a local support system, not to mention the house we had our post wedding celebration in, but needs must.

As we’re both able to drive, moving further afield was an option. Widening our search, we spotted one bungalow in a more rural area. I was hesitating as it was quite remote, but there weren’t many bungalows to choose from. Lots of those that we did see also needed a lot of work doing to them. Lots just didn’t suit us at all as people with modern taste and an aversion to 60’s decor in keeping with the age of former owners!  I don’t imagine what we’d have done had we not been able to drive.

So we head to the bungalow. Fran, using her chair, literally had to crawl inside as there was no ramp of any sort. Once there though, the house worked and was ready to move into. We knew we needed to move quickly to get this rare gem and within minutes we’d put an offer in. Scary but true.  One of the biggest (and certainly most expensive!) judgement calls we’d ever make having to be made in what felt like a split second.

Within minutes, we had to decide whether to put an offer in to secure a rare suitable bungalow for us…one of the biggest calls we’d ever make made in a split second

Fast forward six months, and our accessible house has immeasurably improved our lives. We can actually use all of the house and feel liberated, as opposed to imprisoned by it.  I’d recommend living in a bungalow to anyone and think it’s a real shame there is such a shortage of them.  Moving has been a complete mission, and we’re really grateful for the support of Fran’s PA’s, who were vital in making it possible.

Every day Fran and I are thankful for the pleasure an accessible home (in every sense of the word!) brings and think everyone should have the opportunity to experience it.

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