Tag Archives: Disability

The Social Side of Living with Restricted Growth

16 Jul

Many months ago, I had seen on Twitter that someone else with a growth condition had referenced a paper quoting some research findings about the social experiences of people with restricted growth – today, I finally sat down to read the paper those statistics came from, and so, so much of it resonated with me that I felt I had to write a post for this blog. Not all of the participants in the study that was reported in the paper had Pseudoachondroplasia (a range of restricted growth conditions were included), but many of the experiences described seemed extremely familiar. The paper is called ‘No laughing matter: medical and social experiences of restricted growth’ (Ref: Shakespeare, Thompson and Wright, 2010).

In the paper, the social dimensions of disability are discussed, highlighting issues that people with growth conditions may face beyond the physical limitations often thought of when considering disability. The paper describes how at first sight ‘people with restricted growth do not appear to experience functional limitations, beyond obvious issues of height and reach’, with one participant quote detailing how people assume there’s nothing wrong with her when she’s walking about, but in reality, her hips are really, really painful. This is certainly something I can relate to. Not with my hips (the replacements are still fabulous!) but with my knees, and with my shoulders, and on ‘bad’ days, my wrists and ankles too. I don’t tend to mention the daily pain I get with both of my knees, but taking codeine isn’t part of the average 27 year old’s morning routine, is it? 😉

Further on in the paper, the topic of mental health issues was discussed. Whilst I have been lucky enough not to need anti-depressants at any point in my life, 37% of the study sample had experienced mental health problems, attributed to feelings of loneliness and social exclusion, and to experiences of pain and physical deterioration. I can certainly see how that can happen. I have experienced many lows in life, where I’ve struggled to manage the pain alongside the usual ups and downs of life everyone has anyway. Where I’ve felt that my disability is stopping me from achieving what I most want to in life. I’ve felt the frustrations of not being able to get involved in a variety of social situations – particularly anything sports-based, or even ‘proper nights out’ where I’d need to stand up all night (not that I’d want to do that anymore, I’ve aged too much, but you see my point, these things can bring you down!).  And… where social interactions are a part of life, they’re not always positive ones for people with restricted growth either, which can further contribute to mental health problems. Here are some results from the study participants in the paper:

  • 96% experienced staring or pointing
  • 77% have been on the receiving end of verbal abuse
  • 75% feel the often attract unwanted attention
  • 63% often felt unsafe when out in public
  • 33% have been physically touched by people in public
  • 12% have experienced physical violence

Thankfully, I haven’t experienced all of those issues… but those in red, I have. Staring is almost guaranteed when I’m out in public – I try my best not to let it bother me, but when it’s so frequent, it does become incredibly difficult to sometimes. Verbal abuse – I should probably refer you back to another blog post here; the word ‘midget’ is NOT OKAY. Unwanted attention – yep, lots of it – I don’t want to be the topic of conversation between a group of teenagers in a restaurant, nor do I want to be followed around a club by a creep because I’m ‘so short it’s cute’ (Yes, that’s happened, he had to be removed from the club, as he wouldn’t take no for an answer). Feeling unsafe when out in public? Absolutely. That’s why I won’t go to really busy areas – I’m just not in the average person’s line of sight, and often have to dodge elbows swinging near my face – so busy festivals seem like an accident waiting to happen – otherwise, I may attend one! As for being physically touched in public – yes, that’s happened too. Inappropriately in clubs – “I’m going to pick you up, you’re so tiny!”. In general public spaces – “Can I touch you? You’re lucky!” (what?!). Thankfully, I haven’t experienced physical violence, but as the research shows, and as I’ve heard from others with restricted growth, that’s another social interaction some of us have to ‘deal with’, and we simply shouldn’t have to.

It was just three days ago I noticed myself allowing these negative sorts of social interactions influencing my decisions and choices whilst out in public. I took myself to the zoo (if you’ve never been alone, do!)… but it’s the last week of school, so there were lots of school groups there. I found myself dreading walking through a group of those about 10 years old, for fear of hearing their comments about my height, so I found myself changing direction purely to avoid it. I do tend to avoid putting myself in situations where comments are likely, as it’s easier not to hear them than it is to try and remain positive in the face of these situations.

I suppose what I want to highlight in this post is just that there is certainly more to having Pseudoachondroplasia (and other restricted growth conditions) than the physical difficulties I’ve detailed in most of the posts on this blog. I’ve touched on some of the ‘other challenges’ in other posts (for example, in https://lifewithpseudoachondroplasia.wordpress.com/2013/11/04/true-emotions-self-acceptance/ and https://lifewithpseudoachondroplasia.wordpress.com/2014/10/31/little-things-about-little-me-dwarfism-awareness-month/), but this paper certainly resonated with me, and I’d urge anyone wanting to understand a bit more about living with restricted growth to download it and have a read – there’s a lot more to it than the bits I’ve mentioned here!

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What Not To Do? Assume.

15 Aug

Recently, I watched the series of clips shown on Channel 4, produced in partnership with Scope (a disability charity), called ‘What Not to Do’. These are short clips, as part of a campaign by Scope, aimed at tackling attitudes to disability, by highlighting the awkwardness that many people feel around disabled people. Within these clips, was one involving a lady with a restricted growth condition (http://www.channel4.com/programmes/what-not-to-do/on-demand/62097-001) – and some of the interactions between this lady, and an actor playing the role of company staff member below her, reminded me of some of the situations I’ve found myself in before. So! I thought I’d share some of them – as things that can go on the list of, as Channel 4 said, What Not to Do!

Where to start? Crouching down to speak to me. Yes, I am short and it’s unlikely that whilst standing you’ll feel eye contact is as natural as it may be with someone closer to your own height – I definitely have to look up most of the time when chatting to someone, and you’ll probably feel like you’re looking down on me… but! Please, PLEASE never crouch down to try and resolve this! It happened once, with a teacher of mine, and I was furious. I’m not a child; you do not need to ‘get down to my level’, I am used to needing to look up in conversation – so just carry on as you would with anyone else! I was bemused that someone who had known me for years thought this was an acceptable thing to do, and upon reflection, I’ve decided that if anyone in the future does this – I won’t just accept it, I will have to explain how that simply isn’t necessary – and is crossing the line of acceptable behaviour.

What else? Having lower expectations of me because I’m shorter and have a disability. I’ve written another post, detailing what someone with Pseudoachondroplasia can achieve, in response to a search term I’d noticed had brought up my blog before, which questioned whether someone with this condition could lead a fulfilling life. (https://lifewithpseudoachondroplasia.wordpress.com/2014/06/23/what-can-a-woman-with-pseudoachondroplasia-achieve/). I shall reiterate this point. Just because physically I may be a little limited in what I can do, this does not mean I can’t aim highly in all areas of life. I try not to let this disability hold me back, I have many career goals for my future and am slowly but surely ticking things off my list, I hope to settle into a successful relationship and have a family of my own – as most others would hope to, and there are many, many other things I hope to achieve. However, like in the video clip I referred to at the beginning of this post, I don’t understand why people would expect less of me, think my life aims won’t be so high, simply because I live with a disability? So please, don’t ever tell me I’m ‘inspirational’ or anything similar, simply because I’m leading a life more ‘normal’ than you may have expected. I find it almost insulting that you might expect less of me, I am a human being, not a disability. I am not defined by my condition. (I have reason to believe this is how lots of people with disabilities feel, but I won’t speak on behalf of others!)

Thankfully, not every situation acted out in that clip has happened to me – I can’t imagine how I’d react if someone spoke to me like I was a child! However, I have experienced a couple of the others – being picked up on a night out, ‘because I’m so small’. Without asking (when the answer would have been a firm, ‘no’), just to pick me up is NOT acceptable. I am not a doll. I am not a novelty toy you can play with.

Finally, one more assumption that I wish people wouldn’t make, is about my ability to drive. Yes, I am capable of driving. And like in the video, no, I don’t drive a SMART car just because I’m small. I just drive a car of my choosing, with pedal extensions to allow for my shorter legs. Along with this goes another assumption that seems to be made incredibly frequently – my blue badge I have which allows me to park in the ‘disabled parking’ places. Yes, I am young, and yes, when I pull up it may look like a young woman who is about to abuse the provision of such parking places, but actually, I do have a badge. I have a badge because parking further away from the venue I’m trying to access results in me having to walk further, and therefore being in pain sooner. I’m well aware that my disability may not be as instantly understood as requiring a disabled parking badge, as say, someone in a wheelchair for one reason or another, but I wish people would stop making these assumptions that I either don’t have one, or don’t need one! So please – if you ever begin to judge someone before they’ve had a chance to display the badge in the window, wait before you give those disapproving/disbelieving looks!

Apologies for this post turning into a bit of a rant, that wasn’t intended – I thought the Scope/Channel 4 clips do a good job of highlighting some of the ridiculous things people with various disabilities have to deal with. I’d recommend you put aside some time to watch the whole series. I suppose I just wanted to highlight some of the assumptions that are often made about me, because I have Pseudoachondroplasia, and how these assumptions simply shouldn’t be made. I fully accept that the condition does change my life in some ways, but it does not define me and everything I do, so please, please don’t think it does! I would far rather answer a direct question, if you want to learn about how my disability might affect me, than for you to assume! Please, never assume these things!

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I Can See You’re Staring, and Yes I Heard What You Said!

22 May

Besides the obvious frustrations of living with Pseudoachondroplasia, what I find most annoying (and upsetting sometimes) is when people stare.  Yes, I am shorter than most people my age, and yes, my legs are disproportionate to the length of my torso, and yes, I do have to use crutches otherwise my stride isn’t smooth, but I am just as observant as anyone else, and I do notice people staring. And commenting. The amount of times I’ve heard ‘look at that girl, she’s really short’, ‘wow, she’s small’, ‘look at that midget’ and all sorts of other height related comments! I’m not deaf, I CAN hear you! The most appalling thing is that it isn’t always children that say these things.  If it was, I could understand – but when a teenager, or an adult says it, I am less than impressed. Surely by the time you’ve spent a few years on this planet you would have acquired a little respect for others, or some sensitivity?! Obviously not.  I have challenged a few people in the past, asking them what exactly it is they find so fascinating about me, because I’ve noticed they’ve been looking for an awfully long time – it results in them blushing, feeling very awkward and an embarrassed ‘sorry’.

The point is though, I shouldn’t have to do this.

I accept that there is no ‘normal’ in life. Everyone is different, physically and mentally. What a boring world this would be if it wasn’t the case!  I think the diversity of people should be embraced.  So why do some people think that anyone who doesn’t fit their idea of ‘normal’ is there to be ridiculed and that it’s okay to stare, point or say things about them?!  I’m pleased that I’m not a particularly sensitive person, because if I was I think I would have extremely low self esteem by now.  What I try to remember is that  it is these people who have the bigger problem, not me.  I may have a different appearance to a majority of society, but what I also have is a lot of empathy for others.  They may consider themselves ‘normal’, but they clearly don’t have much understanding of people – or any consideration for others’ feelings.  I know how I would rather be! 🙂

This is turning into a bit of a rant, which I didn’t want it to be…! I will stop going on now, for fear of making this post one fuelled with anger, but what I wanted to get across was that I think it’s wrong that people stare and point.  It’s rude. It’s hurtful. It shouldn’t be accepted.  I would far rather someone approached me and asked why I was short than to have them point and whisper… I would be more than willing to explain if someone was curious! But if you’re unwilling to talk to the person you’re talking about, then don’t talk about them.  It’s difficult enough facing problems brought about by disability without having others pointing them out!

Okay, rant over! 😉

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Diagnosis

21 Mar

Okay, well I thought I ought to begin at the very beginning- when my parents were told I had Pseudoachondroplasia.

Mum had already noticed that I wasn’t the typical toddler, climbing over furniture and running everywhere, yet put it down to my nature and the fact I was a calm child. However, when she noticed that I was frequently getting pain when I had bent down and would struggle to get back up again, I was taken off to the GP. The problem was, I wouldn’t necessarily be in pain during that doctors appointment, and although more than one doctors appointment was booked, and a doctor was called to come see me at home once (or twice? I’m not sure, I can’t remember this myself), there were no visible signs to the medical professionals. So, this meant, in their eyes that there was nothing wrong and my Mum was a neurotic mother! Or was she?!

I’m not entirely sure in what order everything after this happened… but eventually, after getting the doctor to recognise that there were unusual patterns developing in the way my body worked (that I would get pain whilst bending down and I couldn’t walk as far as other children could), a misdiagnosis and many tests and x-rays, at three years old, I was diagnosed with Pseudoachondroplasia.

Being told that their daughter would be shorter in stature than her classmates, would suffer pain in her joints from a young age, and would require surgery later in life to correct bone deformities must have been quite a shock for my Mum and Dad. Being their first child too, parenting itself was a new adventure, let alone bringing up a child with a physical disability!

My parents were told that I had a ‘mild’ case of the condition. I have since been told there is no such thing as a ‘mild’ case. Yet I have read articles saying that in fact, there is such a thing. Either way, I have Pseudoachondroplasia. I am one in 30,000! 😉

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