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!

x

“So, are you a dwarf then?”

8 Jul

Just a quick post, to see if I can get any opinions/thoughts on something that happened to me a couple of days ago – which I’m not sure if I’m comfortable with or not, would you be? Let me know…

So, I had just been up and down the aisles of Tesco, collecting my shopping, then I waited patiently in the queue for the checkout… said hello to the cashier, he said hello back, ‘How are you?’, ‘Fine thanks, you?’, ‘Fine’, you know, the norm. Then, as I was about half way through packing, he asks, out of the blue, “So, are you a dwarf then?”. Stunned by his direct question, I responded, “Well, yes, technically apparently so”, silence. Then, a few moments later – “So, have you been stretched out then? You’re a bit tall.”.  Urm, what?!?

Whilst I’m pleased he had the courage to ask whether or not my obviously short stature is down to dwarfism, rather than just stare, I’m not sure my height/disability/surgical history is actually much of his business? Is it? Or am I being overly sensitive/defensive? I can’t decide – so, thoughts please!

x

Dwarf? Little Person? Midget??! Ruby.

15 Jun

Dwarf. Little Person. Midget.

Just three of the commonly used terms used to describe someone living with a type of restricted growth condition, including pseudoachondroplasia. I, as an individual with such a condition, am not a fan of any of these terms, and I’ve been thinking about why – so thought I would share my thoughts, in case anyone reading this ever wants to make reference to a person living with such a condition. Before I begin, however, I ought to state that when mentioning such terms, I am not condoning their use – and mean no offence to anyone who disagrees with what I say – as I’ve stated, these are merely my opinions on the matter.

So, what got me thinking about this? Not that someone had called me by any of these terms, but because I have been engaged in many a conversation lately about how to refer to someone who is living with dementia. NOT as a sufferer, NOT as a victim, nor any other term, which may imply that these individuals cannot remain their own person, but as ‘a person living with dementia’ is the answer! At a Dementia Friends Champion training day that I attended just last week, this issue was discussed again – about how media refers to people living with dementia, and how this contributes to a negative outlook on these people and their lives, as though they have become their disease, rather than a person living with it. As the population ages and dementia becomes a topic which is increasingly discussed in the media, the terminology used has become more of a talking point – to ensure that individuals living with dementia do not become ‘sufferers’ in the eyes of others. However, this made me think – as people living with dementia are gaining awareness of a ‘correct’ way to acknowledge their condition, then why is it still acceptable to group people with a growth condition under a term with negative association?

Let’s begin with the most obvious, and most widely acknowledged offensive term that is sometimes (though thankfully not as often now!) used to refer to someone who has a growth condition – Midget. Not only is this often factually incorrect as a description, because a ‘midget’ used to refer to someone short in stature that is in proportion, whereas many growth conditions leave individuals with disproportionate bodies, but it is derogatory – particularly now it is known to be an offensive term.

Then, a more widely accepted term used by many (particularly in the US I realise) is ‘Little Person’. Whilst many people with growth conditions are happy to be referred to as this – I’m puzzled as to why, and would respectfully ask anyone who considers labelling me as this, not to. Why? Because ‘little person’ to me, is belittling, a term more appropriate for a literal description of a child, not an adult who just happens to be shorter in stature than average. I realise that societies tend to categorise people who are ‘slightly different to the “norm”’, but the use of ‘little person’ is not something for me, thanks!

Dwarf, defined as ‘A person with a usually genetic disorder resulting in atypically short stature and often disproportionate limbs.’ (http://www.thefreedictionary.com/dwarf). Definitely a widely acknowledged and used term, even in the medical field… so I suppose I ought to accept that – but only, I believe, in a medical environment – where my medical condition and height may be relevant.

The point I’m trying to make is – much like people living with dementia don’t lose their individuality and become their disease and should be named by their chosen name they have lived by their whole life – that people who happen to have a growth condition are far more than that condition. They are just people who are living with a growth condition as a part of their life. Much like you may be an individual living with anything – whether that is impaired vision, freckles, or blonde hair. I, am an independent, adult woman, capable of most things that any other person is – I do not need to be labelled, and my height has very little to do with anything. Nobody wants to be labelled when the label being used has negative connotations – and I am no different. I go by Ruby, and Ruby alone. Not ‘dwarf Ruby’, nor ‘Ruby the Little Person’ or ‘Ruby the Midget’… and I would challenge anyone who tried to refer to merely as an example of a type of growth condition! I do not allow my medical condition to affect the way that I live my life, so I certainly don’t want it to allow me to be labelled – and I believe this is probably the opinion of many living with a growth condition… the preferred reference is by name – even if some people are more accepting of the widely used terms! So please, if you’re unsure how to refer to someone of shorter stature, remember, the answer is, as with anyone else….BY THEIR NAME.

x

p.s. For reference, if I was going to be a ‘dwarf’…. I’d probably be Sleepy – particularly after the intense period of coursework I’ve been doing recently 😉

https://s-media-cache-ak0.pinimg.com/736x/39/97/c7/3997c72e9e7be826b049a2f2fe8f8347.jpg

Small, yes, but… Undateable?

8 Jan

Undateable. Not exactly something you’d want to be described as, is it? Yet as Channel 4 begin another series of the programme ‘The Undateables’ it does make me wonder whether if I were to apply to be on the show, if they’d be happy to give me that label too. To date, they have had three individuals with another form of dwarfism (achondroplasia) on the show, which leads me to believe that they would in fact, consider my growth condition, or disability, as a reason to make me ‘undateable’ – as a reason why I may struggle to find love in life, to have a relationship.

I don’t want to spend this post ranting about my opinion of this show (though, for the record, I think it’s terrible), but it has made me think – I don’t view myself as undateable (or at least, not because of my condition!), but is the view of others genuinely that just because someone that they may otherwise have a romantic interest in has a disability of some description, that they are ‘too different’ to date? And! If that is the case, then should those individuals with the disability be the ones to feel bad, or should we reconsider just how narrow minded some people are – because they cannot see beyond a difference between them and another person?

I suppose I’m writing this post because I have been thinking about how I may be perceived by others, but also because for anyone who may be reading this, with a disability themselves, I want to pose this to you – would you even WANT attention from someone who sees your disability as a barrier between you and them? I suspect not. Aim higher, you deserve a much better person!

I’ll take this opportunity to share a few experiences I have had with men, regarding my height (as the most obvious part of Pseudoachondroplasia), some, I found a little funny, but some could have caused an incredible amount of humiliation or hurt to someone who is perhaps not as thick skinned as myself….

  • This was not too long ago, that I was approached on a night out, in a club with this line, from a guy wanting to dance with me: “I don’t want to offend you, but I think we should dance… because you’re the same height as my Mum”. Quite a bizarre opening line, if you ask me – but what a thing to say! I am well aware that I am short, but I wouldn’t see that as a reason to dance with a man 😉
  • Another night out in a club: I was approached by another student, with this proposal… “You should go home with me tonight. I’ve always wondered what it’s like to **** a midget”. (Excuse the term, I hate it- but am just saying what I was faced with!) What did he honestly expect? Agreement? That I’d want to satisfy his curiosity?! Needless to say, I didn’t take him up on his offer!
  • My friend and I decided to sign up to Tinder, to see what all the hype was about. What I didn’t expect was to see this type of opening line when I opened a new message: ‘I’d want to date you, but you’re so tiny, we’d look ridiculous’, ‘Wow, you’re small. REALLY small’, ‘If we dated, I’d have to carry you around in my pocket because you’re so small’… I could list so many, many more. Do I need to have my height pointed out? Is that honestly the only thing those men had noticed? It’s all very strange to me, that anyone would think pointing out someone’s height is a good opening line. I suppose they may not have noticed that I’m not just short in stature and wouldn’t be aware they could be causing offence, but I don’t see why anyone WITHOUT a growth disorder would be interested in dating someone with that opening line either really!

Those are just three of the stories I could tell, to give an idea of the approaches I’ve experienced. Not all of the men I’ve spoken to before are as shallow, or stupid as those I’ve spoken of though… and whilst I am currently not in a relationship, I think it’s fair to say I don’t think having a disability makes someone (or me) undateable. It makes someone different. Everyone is different, disability or not. It’s the differences in people that make people connect, and they should be embraced. My message to anyone reading this is that let you shine, as you, not as you with a disability. Don’t feel you have to live life differently. Yes, there will always be those narrow minded people who aren’t worth your time – but it’s not those you want to be with anyway, find someone who loves you for you.

I’ll stop now, before this becomes a relationship advice blog (!), but I just wanted to point out, on reflection of ‘The Undateables’ that this is just another area that Pseudoachondroplasia can affect in life – if people feel the need to point out disabilities as being a barrier to everything, including the basic right in life – love.

heart

x

Little Things About Little Me… (Dwarfism Awareness Month)

31 Oct

I said at the beginning of October (Dwarfism Awareness Month) that I would post at the end of the month a collection of the photos and thoughts I’ve had in the past 31 days about how dwarfism may impact my life in ways that others may not generally realise… so here I am, with my list of 4 areas…. 🙂

1. The Obvious One.

StoolsPetrol  Out of reach (general) Library shelves Blind cord Bar Height

The height of the environments I enter.

Whether it be seating, reaching things on shelves in the library, not being able to adjust blinds because the cord is out of my reach, or being pretty much face level at the bar when I go out, there are so many many things that everyone of average height seem to take for granted. It probably can’t be helped in some situations, but there are some which could be altered to suit everyone- and to live with lots of minor challenges like this every day is really quite frustrating.

2. Clothes.

Clothes shopping – most girls’ dream. My nightmare. Firstly there is this situation:

Clothes in shop

Not many people can reach ALL of the clothes on a wall like this with ease, but at 4ft 9″, without asking for help (which, for those who know me, you’ll know I don’t like to do!) my choice of clothes is limited by what is in reach!

Then there are the clothes themselves…

Sleeves

Sleeves and trousers are forever too long. It’s my limbs that make me as short as I am, so getting clothes to fit them is a nightmare. I roll/scrunch sleeves up, I fold the ends of jeans up under boots, and I envy all of those who have the normal ‘I can’t find a pair of jeans to fit’ problem! haha!

The same with shoes…

Uggs

Shoe shopping is probably my least favourite type of shopping. With short and wide feet being part of Pseudoachondroplasia, finding any shoes to fit is a challenge which could reduce a girl to tears! I don’t have tears for that though, so I live in Ugg boots, boots that are actually too long for my feet, and flip flops… but it’s a factor of dwarfism which is a constant daily reminder, when I can’t choose a pair of shoes based on them ‘matching an outfit’!

3. The Pain.

It isn’t the case for every type of dwarfism, but for Pseudoachondroplasia, there is a lot of pain involved – on a daily basis. Most of my joints crunch, crack and click as I move, they ache when it’s cold, and they stop me from being a particularly physically active individual. There’s the additional consideration of not wanting to wear out arthritic joints to the point where they need replacing super-early too… I’ve already had my hips replaced, so I’m now very wary of wearing out my knee joints as I know they’ll need replacing in the not so distant future too. Because of all of this pain (which I try to hide from others), I have to alter my lifestyle. It involves a lot of driving, in an adapted car.

Car Pedals

I have pedal extensions so I can reach them with ease. My car is essential to me though… as even little walks to the shops could result in some length of pain for me, which is avoidable by driving. It does mean however, that to those who don’t understand the effects of Pseudoachondroplasia – I seem incredibly lazy!

And finally….

4. Social Situations.

Whilst I’m quite confident around people I know, I lose my confidence the moment I catch someone staring or hear someone commenting about my height/appearance in public. I’ve written about it before in other posts, and also touched on how emotionally it has an impact ( https://lifewithpseudoachondroplasia.wordpress.com/2013/11/04/true-emotions-self-acceptance/ ) but I thought I’d add a little reminder for those reading this who may not have considered it before – how much of an impact a little negative comment from you could make if you pass a comment on someone with dwarfism – it’s enough living with all the challenges of Dwarfism every day without having to deal with that too!

This little poem I wrote a while ago seemed to make a point before, so I will post it again, to reiterate my point..

“Just one woman, diagnosed soon after birth, with a growth disorder, what is she worth?
Being called midget, elf, disabled, short, a freak?
Or to be treated as equal to anyone you might meet?

Yes she is short, she may struggle to walk, doing certain things in life requires a little extra thought,
But more often than not that will not hold her back, until she experiences another verbal attack.

Life presents her with enough little battles without having to suffer ‘behind her back’ cackles,
Thoughtless comments and passing remarks, may seem nothing to you but they break her heart.

She knows that her stature makes her stand out,
She’ll never be able to see above all the crowds,
But having it held against her just should not be allowed.

So just take a minute to think it all through, before you comment; imagine it was you;
Who was born a little different and ‘not quite the same’…
Would you want to be labelled and be called names?

She is just one woman, with huge life ambition,
Just one woman, who gives life her best,
She just happens to have a medical condition,
And deserves to be treated just like all the rest.”

I hope for those not ‘in the know’ about it already, that this post has made you more aware of some of the aspects of dwarfism you may not have previously considered. As always, if you have any questions about anything I write, or want to ask any other questions, feel free to contact me – rubysallen@hotmail.com – I’m all for passing on my knowledge 🙂

x

October: Dwarfism Awareness Month.

2 Oct

It’s October… and it’s the month of raising awareness of dwarfism, in all it’s forms.

I’m not one for going on about this condition I have, so filling my social media streams with medical information simply isn’t’ my style. So, having seen a post on Facebook from a friend in the US who also has Pseudoachondroplasia who is raising awareness in an interesting way, I’ve cheekily decided to copy his idea and will be posting it on here at the end of the month.  Stephen’s idea is to post photographs throughout the month which show some of the challenges we face as the small members of society which the ‘average’ person may not usually consider or learn of… his started with a photo of his view at a sports event – someone’s back. Not exactly a brilliant view, but the guy blocking his view probably hadn’t even realised what he was doing by simply standing up without checking who was behind him.

I think that whilst I could summarise in text all the smaller issues in life caused by this condition, forming a collection of images to illustrate how my life is on a day to day basis would be a) more interesting and b) more likely to get others thinking about the effects of dwarfism on an individual’s life… so, best I start taking photos this month to post towards the end of the month (or I may post a few at a time throughout October perhaps…).

Thanks for letting me copy your idea Stephen… let the photography commence!

x

‘Hippy Birthday’ Hip #1

18 Sep

Exactly one year ago today, I had my right hip replaced. Pre-surgery I was pretty nervous as it was by far the most major surgery I had had to date… But a year on from the new body part taking up residence in me? I couldn’t be happier I went ahead with it!

In the past year, I have not only had my left hip replaced too, but been on many walks, been able to sit cross-legged for the first time in my life, been pain free on many many days, been on holiday and not needed to take my crutches as I know I can do the walking and many more things as ‘firsts’ in my life. My surgeon says I am doing very well and is happy to see how much the surgery has improved my life and I still cannot thank him enough. Yes, I’ve had to take a year out of my life plans to get this done, but it was the best decision I could have made. Sadly, my knees are now letting me down, but this post is a positive one, so I won’t dwell on that!

These hips are by far my favourite body part of mine and the scars I was initially so down about are now nothing more than a reminder of the good changes I’ve had in life due to the surgery… So ‘hippy first birthday’ hip number one! 🙂

x

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