Monthly Archives: July 2016

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,

Chris 

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:)

0 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.

0 “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!!:)

0 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.

0 Disability and employment 

Statistically, I’m an exception.  Why?  As I am lucky enough to be in full-time work and I am a disabled person.

It saddens me that this is the case, but the stats tell the story.  For me, being able to work means a lot.  It gives me the chance to make a positive difference, a sense of accomplishment and routine, all of which are really important.  I have had spells both working for myself (something quite common for disabled people) and as an employee so can see the merits of both.

Working though is a choice and has an impact.  I know people who actively choose not to, or don’t have the opportunity to work.  The contribution that many disabled people make through volunteering is also significant and should be more widely recognised. It can also be a means to gain experience and softer skills needed as a bit of a stepping stone, or as an end its own right.

The impact of work means that I have to make choices.  This weekend, it has meant doing very little at all.  I have not strayed far from bed as I’ve sought to rest my weary body.  It’s not something I like doing at all but it means I’m good to go again come the start of the week, ready to try to make that difference.

Writing this blog has been a bit tricky, but I decided to do so in order to raise awareness.  I’d also say that the sense of fulfilment that you get from work is great.  A few people I know have been discouraged from working, which I think is a shame.  To be clear – I’m not saying everyone should work, but if you want to, you should be given the opportunity to do so.

That said, the impact of work does have a flip side and the physical demands it can exert should not be underestimated.  Behind every disabled person there is a story and a complex range of factors that make up what is going on.  Each day can vary too depending on circumstances.

There is a huge gap between between the number of disabled people who want to work and the considerably fewer number who have a job. Being able to work is one of the most important and valuable things in my life. I’d like other disabled people who want to experience that feeling to be able to do so.

0 Disability and the Tory Leadership Contest

Recent discussion of the candidates for the leadership of the Conservative party have left me with one question: What do the candidates think about disability issues?

A snapshot analysis* of voting records and speeches makes grim reading for disabled people. The headline for me is that regardless of the winner, its unlikely to be good news.  I reach this conclusion with reference to how the candidates have voted regarding welfare issues, as categorised by theyworkforyou.com:

What this analysis shows is that all candidates are:

• Pro bedroom tax
• Against providing greater levels of welfare support to those including disabled people

It gets more interesting when you look at the speeches of the leadership candidates.  This shows that Gove has not mentioned disability since November 2013, followed by May in February 2014 and Fox in July 2015. 

Arguably the two leading contenders for leadership of the Conservative party have not spoken about disability for at least two years.

Faring slightly better are Leadsom who mentioned disability in relation to Energy policy in March of this year and Crabb.   Crabb has spoken the most of all candidates in relation to disability issues and has recently addressed disability employment issues in his speeches.

Overall though, it appears that disability issues do not feature highly in the leadership contenders agendas. It will be interesting to see if more emerges through media appearances and press coverage as the campaigning continues.

*A note on methodology

In order to compile the above I used www.theyworkforyou.com.  I looked at voting records on welfare issues and searched speeches using the term ‘disability.’  Though this is a snapshot, as opposed to an exhaustive study (and thus has some limitations), it does pose some interesting questions!