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!

x

 

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2 Responses to “The Social Side of Living with Restricted Growth”

  1. Hannah August 13, 2018 at 7:22 pm #

    Hi!

    I’ve really enjoyed reading your posts! I also have pseudoachondroplasia and I’m still trying to understand everything about it at 22 years old. How old were you when you had your hips replaced? I’ve had 4 surgeries related to this disease. Three on my legs because they were bowed at birth and a breast reduction to make it easier on my small body. I want to get my hips replaced soooo badly. My mom had both of hers replaced and has felt so much better. But apparently they haven’t developed small enough technology to do them on my small hips. But it sucks because they pop out of place and I couldn’t walk for a week one time. I would love to hear about your experience. Also, how do you stay thin? I find it hard to lose weight and excersising is usually too hard on my joints. Thanks for these posts and I hope we can connect soon!!

    • rubysoniaallen August 13, 2018 at 7:27 pm #

      Hi Hannah, I’m pleased you’ve enjoyed reading my blog 🙂 I was 22 when I had my hips replaced (5 years ago). If you send me an email to rubysallen@hotmail.com I’ll send a proper reply in response… 🙂

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