A Quick Hello

14 Mar

img_9550.jpgRight, well this is my first ever attempt at a blog… I’ve never really known how to go about them, but here goes!

I’m not sure that how I’m going to be writing is in fact a blog, as it is more a diary of reflection – covering events in my life that are associated with my growth disorder, Pseudoachondroplasia. Either way, welcome to my ramblings!

I decided that I would write about my experiences of having Psach (I can’t keep writing the whole word, pseudoachondroplasia… it’s long!) as I had the parents and grandparents of a little girl who had just been diagnosed with the disorder contact me on Facebook.  They had recently had the shock of being told their gorgeous little daughter has a growth disorder and that her life may not be the same as most other children… so naturally, they wanted to gain as much information about the condition as they could, and speak to as many others who have Psach as they could.  They wanted to know all that they could to support their daughter.  I have spoken with them all quite a bit since they first made contact and explained to them much of my experience, and I hope that this has helped them in any way possible.  However, discussing the matter with the family lead me to look for other’s experiences online… and I couldn’t find any! Not one person with Psach has written their experiences of the condition online (Well, not that I can find anyway!). So… I thought I’d give it a go.     🙂

I’m Ruby, a woman in her twenties, living in England (UK) and I have Pseudoachondroplasia…

I’m not quite sure where to start from, so it’s just this little hello message for now.  I’ll write again soon!

x

p.s. If anyone wants to contact me regarding anything I post – please feel free to comment on here, or send me an email to: rubysallen@hotmail.com Or, tweet me @rubysoniaallen

p.p.s. If you’re wanting to read this blog to see how the condition has played a part throughout my life, you’ll need to start from the earliest posts for chronological order!

Dwarfism Awareness… Success!

25 Oct

A positive post, which relates to my less positive one that I had originally written for Dwarfism Awareness Month, about the media/comedians/actors taking responsibility for the portrayal of, and reference to, people with dwarfism.

Last week, I went to see a comedian, one I have always admired – probably one of my faves, and was enjoying his set…. then boom! Jokes about People with Dwarfism. Followed by an audience of people laughing, finding them funny. And there I was, in the middle of that audience, upset, angry, but more upset, and with tears in my eyes – once again, people with dwarfism seemed fair game to be the butt of jokes. I wanted to get up and leave, to get out of there, but that would mean disrupting a row of people, and I just didn’t want the attention, so I stayed put. Hated every last second of the rest of the show.  So, given that it’s Dwarfism Awareness Month, and I had just said in my blog post how I’d like people to contact people in the public eye when they use misjudged, rude, or hurtful jokes about people with dwarfism, I practiced what I preached, and emailed the comedian (via his team)…

I detailed how the joke hurt me, and how awful it was to feel like an audience was laughing at people just like me. To have one of my fave comedians laughing at people just like me. I included my blog post for this year (https://lifewithpseudoachondroplasia.wordpress.com/2019/10/01/public-perceptions-behaviours/). Expected a generic response, or no response at all. But! I got an email back… they’d speak to the comedian.

They did. They spoke to him, and I’ve had a call back, to be given an apology from the comedian, to be offered tickets to see his show again, so that I can see for myself that as a result of my email (highlighting how wrong those jokes were to be included) he has removed those jokes from the rest of his tour. He doesn’t want to be using hurtful or offensive material! Now, I count that as a success for Dwarfism Awareness Month. I have made someone aware. I have made his team aware. And, I have shown that it IS worth speaking out when people portray people with dwarfism in a negative light, or use them as a butt of a joke… we can change society’s ways, one small step at a time!

I’m really pleased with this response. It’s still a massive shame that those jokes were even in a national tour in the first place, but a huge ‘well done [unnamed comedian], for taking responsibility and removing them when you were shown it was wrong’! So please, I will say it once again – if you spot something that’s wrong about the portrayal of, or behaviours toward people with dwarfism… take action, you never know what change you may make!

🙂

x

Dwarfism: Perceptions & Behaviours

1 Oct

Despite the fact that society seems to have become more tolerant of diversity, people with dwarfism still face negative stereotyping and stigmatisation. As a result, they (we!) have to manage the attitudes and negative reactions of other members of the public, which are a major concern for many people with dwarfism and can affect both how we live our lives and our mental health.

As October is Dwarfism Awareness Month, and I like to take the annual opportunity to highlight the reality of the lives of people with dwarfism, I thought I’d write this post. I will detail my personal experiences of managing the attitudes and behaviours of other people toward my disability, and discuss known public perceptions of dwarfism. I will include how past beliefs have influenced current perceptions and how one step at a time, I believe we can educate the public about dwarfism, to address the negative stereotypes and reactions that people with dwarfism are still faced with today.

Personally, throughout my life I have experienced members of the public calling me a midget, staring and pointing at me, discussing me with their friends, openly laughing at my physical appearance, commenting on how I look/move, asking if they can touch me for ‘luck’, and likening me to dwarves from Snow White, and other fictional characters with dwarfism. It isn’t an irregular occurrence and I think to say it happens almost every time I am out in public is an accurate statement. Usually I can brush these behaviours off, ignore them for the sake of them not ruining my day, but cumulatively, these experiences have resulted in many tear-filled breakdowns when one more comment from a stranger has pushed me over the edge, and so I tend to avoid going to places where groups of teens may be (they’re the most likely to comment/laugh, from experience), or going to large social gatherings to meet new people. The behaviours of the public towards dwarfism and people living with dwarfism have, and do, cause me anger, upset, frustration and hurt – they contribute to my issues with self esteem and acceptance of my disability-related differences. Furthermore, they cause those who love me anger, frustration and upset too, as they notice the reactions and behaviours of those around us when we’re out in public, and want to address these people and call them out for being inappropriate, hurtful and rude.

I have also read research articles detailing the perceptions of the public, about people with dwarfism, and their content is beyond upsetting. Some of the phrases people have been found to associate with someone with dwarfism include: sly, stupid, deceitful, unreliable, incapable, conceited, physically dirty, slovenly, sexually perverse, uneducated, creepy and hostile – amongst many, many more. Obviously, reading that these are terms members of the general public have used to describe people like me is extremely upsetting, and each and every time I read/hear/experience a negative comment like this, based on others’ assumptions of people with dwarfism, it knocks my self confidence a little more as it makes me wonder if strangers have held those opinions of me too.

However, I am well aware that most people will never meet someone with dwarfism, and so their frame of reference most likely is from what they’ve seen in the media…. Which, certainly doesn’t help portray real representations of people with dwarfism, and more often than not continues to depict us as stereotypes fitting with historical behaviours toward people with dwarfism. For this reason, I wanted to discuss some of the ongoing issues of dwarfism representation in the public eye, to highlight how the media and other arenas, have a responsibility to help change the public perception of dwarfism.

To go back to terminology for a moment, there is one word that is very controversial – ‘midget’. It is important to explore the historical uses of this term, to fully understand why it is so problematic. ‘Midget’ is a derogatory term because it relates back to the 1800s ‘freak show’ era, where people with dwarfism were put on display as an exhibition for public amusement, objectification, and ridicule because they were physically different from the norm. The term was coined by PT Barnum (the man at the centre of ‘The Greatest Showman’ movie) in the mid 1800s to describe members of the dwarf community who were most socially acceptable (i.e. “well proportioned” people with dwarfism who could entertain on the front stage for polite society). He relegated the rest of the dwarf community, those whose bodies are shaped differently enough to look more than just “really short” to the freak shows. Sadly, PT Barnum was so good at showmanship that the term ‘midget’ became common vernacular, and it became the word that most people learned and used – and continue to use, for people with dwarfism/restricted growth.

Whilst the freak shows of the Victorian era began to fade away in the 20th Century, due to changes in attitude toward people with physical deformities, people with dwarfism continue to be exploited within the entertainment industry. Cultural codes of conduct tell many societies not to laugh at people who are physically different, yet representations of people with dwarfism still often encourage people to laugh at them (I am not here inferring that other impairment have not been used for humour, or are not laughed at, but they are not promoted as humorous in the same way dwarfs in the entertainment industry are, such as being rented out, or thrown around for amusement).

People with dwarfism are rarely depicted as ordinary human beings, or shown as disabled people, but are instead depicted in a voyeuristic manner that is mostly related to humour or mythology. We are usually only included where our condition is our main feature, and it is played upon in a comedic way, rather than represented as ‘normal people’ living ‘normal lives’ with a multi-dimensional character. Some comedians, e.g. Jimmy Carr being a recent example, make direct ‘jokes’ about people with dwarfism – you only have to google his name and ‘dwarfism’ to find out his latest horrendous attempt at being funny at the expense of people with dwarfism. How disabilities are culturally represented affects how they are understood and subsequently, how those with that disability are treated within society. As a result of the past and present representations of people with dwarfism, we are, literature describes, “expected to be cheerful and clowning, or entertainers by profession, since dwarfs in this occupation are the only ones people have seen” – we are also expected to be happy to be ridiculed and to be laughed at, rather than with.

So to return to my original point, whilst I find it unacceptable that adults stare at and ridicule people with dwarfism, the problem is much larger than these individuals’ behaviours and understanding. The bigger problem is how society as a whole continues to portray people with dwarfism in the stereotypical way that is grounded in outdated, unacceptable beliefs and behaviours, as it is societal education and awareness that influences the acceptance of people with disabilities by the public.

As Peter Dinklage said, “this is screwed up. Dwarves are still the butt of jokes. It’s one of the last bastions of acceptable prejudice. Not just by people who’ve had too much to drink in England and want to throw a person. But by media, everything”. I could not agree more. I implore anyone who reads this post to consider not only how they can challenge people’s perceptions of, and behaviours toward people with dwarfism, but to also challenge society on a greater scale – if you see a film, a TV show, or an event that targets people with dwarfism for humour, or objectifies them as an exhibit, please, PLEASE complain to them. Explain why it’s wrong. Point them to this blog post, or one of the many articles also written on this topic. The big change won’t happen immediately, but with education, little by little, hopefully dwarfism prejudice will be addressed in the same way that many other prejudices already have been.

x

Self Acceptance and Relationships.

3 Jan

Just over five years ago, I wrote a post about how having pseudoachondroplasia affects me emotionally, and about my attempts to accept myself as someone with pseudoachondroplasia and all of its complications (True Emotions & Self Acceptance). Within that post, I had written about how I’d avoided relationships, and my fears surrounding relationships:

…I don’t see myself as an attractive girl, so why would any guy? And how will I know if someone can genuinely look beyond my appearance, or just doesn’t want to offend me? I aim to overcome this ‘fear’ as I know most people are self doubting to some extent, but I do think it’s an area of life which would be a little easier if PSACH hadn’t led to me having a fairly poor body image of myself. I’ve also fretted in the past that if I were to be in a relationship, would I be a burden to my partner? For instance, I couldn’t go on a skiing holiday (well, not to ski, anyway!), nor could I go on bike rides, for example. Then there are the times I will HAVE to go into hospital… Would I want to impose my recovering self on someone who could be getting on with their life in the ‘normal’ way? I don’t know…

Well, now I’d like to return to that topic. I have met a man who has, and is, shifting my views on how relationships can work with this condition – and is also helping me to accept myself, and my condition more fully.

We met online, and whilst he knew my height, the reason behind it never came into conversation, and I didn’t bring it up (When do you bring up such a thing? Should you have to? Both questions I had always asked myself…). During our first date, I mentioned how I write a blog – and that’s when I felt I should “own up” about the condition. So I did. And as I did so, I avoided looking at his face, fearful that the words ‘disability’ and ’dwarfism’ would put an end to any interest that he may have had in me, and it would be written all over his face (if, he hadn’t already been put off by my physical appearance in real life, I thought…). His reply was not one of disgust as I had feared, nor one of pity or patronisation as I have previously experienced with other people, but he was genuinely interested to know more. He wanted to know my experiences, to know about the people I’ve met through the blog, he wanted to read the blog. I. Have. Never. Felt. So. Relieved. As we spent more time together, I became more comfortable letting him know my limitations caused by the condition, and he became more comfortable asking the questions he wanted to ask. Now, a few months later, he knows I have huge body confidence issues, he knows I will need many more surgeries, he knows I struggle with managing pain on a daily basis, and he knows that having this condition bothers me in many ways.

He accepts this. He accepts me. He is helping me to accept myself and my condition:

He has even said that he knows I don’t see what he sees in me still, but that he will make it his goal to make me realise, no matter how long that may take.

He has naturally started doing little things that make my life a bit easier; he will carry things I would usually try to carry, to save my shoulders; he will adjust the shower before I use it so I can reach it as I need to; he will, without request, reach things for me if they’re out of my reach…  He doesn’t make a big deal out of these things, nor dwell on the limitations I have because of the condition, he just addresses them with care and consideration.

He has massaged my shoulders on particularly painful days recently, and encouraged me to seek treatment, despite my reluctance to start the ball rolling on another inconvenient pseudoachondroplasia issue being resolved, as he knows the pain needs to be addressed so I can sleep properly/move properly (another blog post to come on these shoulder issues soon…).

Having read the blog post I mentioned I had written a few years ago, he said that my fear of the condition being a burden on the relationship is one I need not have, that he will be by my side through whatever pseudoachondroplasia challenges me with. (We actually had a bit of an emotional moment about this… and I can tell he really means that!)

He has made me realise that having this condition does not mean that I am completely unattractive, nor a burden, nor inadequate. I never thought I would think this way, having always been repulsed by my own body, and fearful of sharing my limitations with someone else, but day by day he is showing me that I was too worried – that whilst pseudoachondroplasia does bring its own challenges, it is not the focus of our relationship, he does not see it as a problem or barrier to ‘us’, just something that’s a small (excuse the pun) part of me, that he accepts entirely. He still wants to learn more, he wants to know how he can help and support me with it all, and that, means the world to me, as a girl who has always tried to hide how I could do with some help… as I genuinely feel that asking him for that help won’t change his view of me one bit. He has made me more comfortable with this condition, and as a result, more comfortable in myself.

Essentially, I have been on a learning curve for the last few months, learning to be open about my condition, my limitations, and my emotions about it all too – to let someone in on the ‘real situation’… and learning to accept that someone else can fully accept all of the above, and not see it as an inadequacy in me, or a barrier to a relationship with me! I wanted to share all of this positivity, as I know I could have done with reading something like this for the last few years whilst I’ve been trying to improve my self-acceptance, and confidence with the idea of dating/relationships. I wanted to write about this, for anyone who may still be doubtful about dating or relationships, when you have pseudoachondroplasia (or dwarfism more generally)… for anyone who may want, or need, to read some positive experiences about just that…

There are good humans out there, who don’t dwell on our limitations and differences, but accept them as part of us, and can see that there is much, much more to us beyond our condition!  Don’t lose hope when you receive derogatory, ignorant remarks from people (sadly, there are many of those people about!), don’t give up… search for someone who will accept your condition as just a part of you, who will make you feel like you can take on pseudoachondroplasia with them by your side!

x

Dwarfism Awareness Month, 2018

16 Oct

It’s October again – which means it’s Dwarfism Awareness Month – so, here’s my little post of awareness for 2018 (Note: previous years’ posts summarised and linked at the end of this post for those who may want to read them)!

This year I’m going to be highlighting how people with dwarfism (in particular, pseudoachondroplasia) can lead ‘normal’ lives in terms of careers, and are not limited to those stereotypical jobs many still associate with dwarfism (i.e. actors in pantomimes as one of the seven dwarves, a dwarf wrestler, or some other purely height based ‘entertainment’ type role). This topic was inspired by two recent events;

  1. There has been heated debate about the ‘Extreme Dwarfanator Wrestling Show’ (a touring wrestling show involving people with dwarfism) which has been cancelled in some venues in the UK over concerns of poorly representing people with dwarfism and promoting violence/negative behaviour toward this group of people too. The flip side of that argument came from those involved in the show itself, and others who saw things from their perspective also, that if these individuals have chosen to be involved in wrestling, then they shouldn’t be stopped from doing so because of their height (Personally, I can sort of see what they mean, but equally I think they could do with looking at the bigger picture and the influence that such shows may have on the public’s attitude toward people with dwarfism as a wider group – still, this post isn’t here for me to go on a rant about that – even if their original show title had the word midget in it! 😡). (https://www.bbc.co.uk/news/uk-england-45522480)
  2. I have had someone I considered a friend comment that their first thought when I mentioned doing a particular job was ‘whether I could reach, and would actually be able to do the job’. At the time, I brushed the comment off, but upon reflection, I think that just shows that even those who have had exposure to someone with dwarfism and their life cannot seem to think beyond the disability, and assume that just having dwarfism will stop an individual from working jobs. Something that for the majority of jobs, I personally feel is not the case for people who have pseudoachondroplasia!

Obviously, considering the joint pain that comes with pseudoachondroplasia, it’s unlikely that we (‘we’ being us with this type of dwarfism!) will pursue careers in intensive sports, jobs where standing up for hours on end is unavoidable, or anything where miles of walking each day are required – but, with some careful consideration about how a job role, or the workspace in which a job is done, can be adapted to meet our physical needs, we can set our minds to most jobs – dwarfism does not have to dictate our career choices, and we certainly don’t have to act in a pantomime, or ‘entertain’ average height people with our shorter stature. I’ve spoken with a number of people I know with pseudoachondroplasia, and the belief of the majority* is that we can do anything we set our minds to! To prove that point, I have asked a bunch of people with my condition to tell me about the jobs they’ve had, the careers they’ve led, and the things they’ve achieved that the general public may not think are possible for someone with a condition like ours – here’s a list summarising some of what people with pseudoachondroplasia I’ve spoken to have been doing:

  • Journalist
  • Social worker
  • Computer technician
  • University lecturer
  • Farm hand
  • Manager of television industry training schemes
  • School teacher
  • Digger operator
  • Script writer
  • Nanny
  • TV Production coordinator
  • Actress
  • Business owner
  • Author
  • Music Manager
  • College teacher
  • Event manager
  • Secretary

Some of the people I’ve spoken to also told me about other things they have achieved:

  • Motocross Racing
  • Various degrees in a range of subjects at all levels
  • Various professional qualifications in all sorts of fields
  • Engineering achievements
  • Pilot in training
  • Counsellor in training

… and these are just from the few people I asked. No doubt if I were to ask more, the list would only grow!

So, hopefully this little insight will change the assumptions that many ‘average height people’ make about people with dwarfism regarding their working potential. Obviously for those who have extreme pain daily, working can be more of a challenge in terms of identifying a suitable job, but that can be the case with people of a whole range of disabilities, and personally (not speaking on behalf of anyone else here with this comment..!), I believe that ‘where there’s a will, there’s a way’ and we should be trying to achieve all that we can, rather than dwelling on our physical limitations and thus limiting our own potential!

x

*I had a response from an individual with the condition that painted a less positive perspective, whereby he felt that people with pseudoachondroplasia should perhaps not aim for what may be their dream job, due to considerations of how the condition may worsen with age and thus affect their ability to work. Whilst I also believe that we must consider how our bodies can physically cope with particular job roles, I personally like to think that with enough adaptation, the majority of careers are not purely a thing to be dreamt of by people with the condition, and that we can usually fulfil job requirements one way or another! Obviously living with pseudoachondroplasia is an individual experience and I cannot speak on behalf of everyone in this post, so I thought I would include this note to make it clear I’m aware that limitations are different due to pain levels/surgeries had, etc. 🙂

 

**As promised, links to my previous Dwarfism Awareness Posts:

2017: I listed the little ways I have to change my life to live well with pseudoachondroplasia lifewithpseudoachondroplasia.wordpress.com/2017/10/01/dwarfism-awareness-month-2017/

2016: I summarised how my life has included a range of surgeries https://lifewithpseudoachondroplasia.wordpress.com/2016/10/

2015: I highlighted the physical differences that are associated with pseudoachondroplasia https://lifewithpseudoachondroplasia.wordpress.com/2015/10/

2014: I gave a few examples of how the condition impacts my life, in pictures https://lifewithpseudoachondroplasia.wordpress.com/2014/10/

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

 

‘Pictures of People with Pseudoachondroplasia’…? Here you are!

15 Apr

‘Pictures of People with Pseudoachondroplasia’, ‘Photos of People with Pseudoachondroplasia’, ‘Photo of pseudoachondroplasia woman’, ‘Adult with pseudoachondroplasia photos’… these are the sorts of things people have been searching for which have returned my blog to them. However, whilst my blog has a number of photos of me, as a child and an adult, I’m aware that there aren’t a great deal of full-body photos, which I’m guessing is what people are searching for – as the effects of this condition aren’t seen in my face! So, I thought I’d do a quick post which should provide something more suited to those search terms…

It’s taken me a while to find these photos, as I’ve always tried to avoid full-length photographs being taken (to this day, I’m not particularly accepting of, or confident with the appearance of my body!)… but here are some, as I was growing up, and more recently, that show you how short I am, how disproportionate my body is, how wonky my legs have been – and are – and how sometimes, following surgery, they’ve been straighter! I hope they’re of use to the people searching for such photos!

x

Dwarfism Awareness Month – 2017 (Part 4)

20 Oct

As the final part of my Dwarfism Awareness Month 2017 blogging, I’m going to list 10 more ways that I live my life a little differently, as a result of living with pseudoachondroplasia… 10 other ways that aren’t ‘just being a bit short’ as many people may initially think is the only difference for someone who has a form of dwarfism. A mixture of some minor changes I make, and some more important considerations and challenges I face, as a way to end the month by highlighting that dwarfism can alter someone’s life in a really broad range of ways… so here goes, the last list of 2017!

22. I operate in slightly different ways when cooking… carrying a pan of water in tiny hands is tricky, particularly when the joints in my fingers and wrist are hurting, so I sometimes have to fill it up and empty it one small jug at a time (or ask someone else to move the pan of water!).

23. Another cooking related one – I’ve been known to take real shortcuts (particularly in the Winter when joint pain gets worse because of the cold, damp weather here in the UK) – shortcuts which mean I don’t have to stand for as long in the kitchen. Ready meals. Pre-chopped veg. The ‘lazy’ options just mean that on the painful days, I don’t have to make the pain worse by standing about in the kitchen!

24. I own a grabber. One of those long stick things, with a handle at one end which can be pulled to grip a claw at the other end… a bizarre item to have about in my home, but it comes in handy in so many situations! Can’t quite reach to re-position curtains if they get caught on the rail? The grabber extends my arms, I can do it myself. Can’t quite reach something I’ve stored on a high shelf? The grabber means I can drag it down myself and it’s one less thing I have to ask for help with. Something has fallen on the floor and my knees are too sore to bend down to pick it up? Use the grabber. You get the idea… it gives me an extra metre or so of reach – and therefore, means I can do a whole range of things myself without having to ask for help! Sadly, it’s no good for changing lightbulbs… I will always need help with that!

25. Much like so many people of restricted, and average, height… I constantly battle with the diet/exercise thing. However, unlike a lot of people who have average bodies, I can’t ‘go for a run’ or cycle, or engage in a whole range of other exercise options to shift the weight. My joints simply won’t take it, and if I push my luck, they can hurt intensely for days. However, with an average sized stomach, I get as hungry as someone of average height. The difference being, they have more height to spread the weight associated with that food quantity across. In essence, I can quickly look very overweight if I eat too much. It’s something I’m currently battling with again – trying to shift some pounds. To look better, to feel healthier, and to be kinder to my joints (the less weight they bear, the less pain there is!). Knowing how many calories I should be eating is a guessing game, even knowing how much I should weigh is a bit of guesswork, as the normal BMI or height/weight charts simply don’t work accurately for someone who is not proportionate in build. So I have to work with what I can see, and currently I don’t like what I see – so I’m trying to do something about it… just slowly, a little at a time, whilst trying not to upset these joints of mine which will soon cause a scene if I overdo it!

26. Talking of things I don’t like seeing, namely – parts of my body, I am forever avoiding full length photographs. I can think of one photo of me where my whole body is in view that I like – all other photos which have my arms, my legs… my whole body in, I can’t stand them. I avoid full length mirrors for the same reason – I don’t like my body, and seeing a reflection or photo of it, to me, is purely a reminder of my short arms, my stubby feet, my wonky, short legs. So please – if anyone is taking a photo with me, if you can remember to try and avoid such photos, I will love you for it. 🙂

27. It isn’t just me I’d rather didn’t have my physical differences highlighted to – I’d rather they were as unnoticeable to others as possible too. Like I said in Part 3 of this year’s posts, I choose clothing to hide my scars, and to try and disguise my curvy back… but I also adjust my posture when I’m around others too. I’ll sit toward the front of a chair, to stop my legs dangling about because they don’t reach the floor so much. I’ll keep my hands out of sight, as I’m aware they look different to the usual delicate hands of a woman. Some of the little things I do I just automatically do now, I don’t have to think about it – but there are some, like this, that I do consciously to try and hide some of my differences.

28. I do a lot of planning. In particular, when I’m travelling somewhere/visiting somewhere new. I check the routes I’ll need to walk to get from A to B, I’ll see whether there are seating options at social venues, I’ll look at all travel options to see which will mean I have to stand/walk for the least amount of time, I’ll even know exactly where I’m going to park if I’m going to a new location that will enable me to be as close as I can to where I want to be before I even get out of the car. People that know me joke that I’m ‘Miss Organised’ – and yes, I am quite the organised type – but in reality, a lot of this planning stems from the need to avoid excessive walking/standing, all to help myself with the joint pain levels!

29. If, as a result of my planning and venue research, I don’t think I’ll be able to do whatever activity/visit whichever place, without needing some help or drawing attention to my physical needs, I do have a tendency to decline invites to places. I’ve avoided gigs at venues where they don’t advertise having seating available. I’ve bailed on weekends away with friends because I know my legs aren’t up to it, and I don’t want to hold them back when I can’t walk as far/for as long, or even for them to have to alter plans to make them meet my needs. I avoid social situations where I just KNOW there’ll be so many people there, there’s bound to be one (inconsiderate) person who feels the need to tell me I’m short/a midget/ask some sort of personal height related question – alcohol fuelled nights out are exactly the kind of thing I dread – there will ALWAYS be questions. Questions to remind me that someone else has noticed my differences, questions that spoil my evening and bring my mood down in seconds, questions that strengthen my disliking of my own appearance. Whilst I hate the fact I still avoid some of the most fun things in life purely to avoid such situations, I cannot always handle the reminders strangers give me, and it seems (at least at the time) worth missing out on the fun just to avoid the comments!

30. Following on from point 29, as something that happens on an almost daily basis, I reckon dealing with comments/questions/staring from strangers deserves a point of its own. Whether it be from a child ‘Mummy, why is that lady so short?’, a teenager ‘wow, look at that midget’, or an adult, without hesitation, looking me up and down with a puzzled expression on their face as I go about my day to day life… or online, on social media/dating apps, where I have continual questioning about whether I am really 4ft 9”? (Why would I make that up?!), or as I recently had, being informed that as I’m under 4ft 10”, I can ‘claim the dwarf label’ if I want. Thanks, rude man! I’m fully aware that I look different, I welcome innocent questions from children (if their parent educates them about differences as a result, rather than encourages jokes about my height… yes, that has happened), but it does wear thin, having to put up with comments/looks from those of an age where it’s no longer acceptable to not be aware of differences/disabilities and act accordingly in your behaviour! I know many people with various types of dwarfism who deal with this daily challenge in a variety of ways, but one thing is for certain – having to put up with this makes us into fairly tough people!

31. The final point of 2017 Dwarfism Awareness Month for me…! I’ve touched on this in a number of previous blog posts, but it is by far the biggest challenge – the life long one – and that is, considering my dwarfism, my disability, in my long term life plans. From planning my career around inevitable surgeries (knee replacements, more hip replacements, possible shoulder surgery…), choosing a house I will be able to move about in day to day, and after surgery, to deciding whether to have children that are biologically mine with or without genetic testing (as there is a 50% chance of passing on my dodgy gene mutation responsible for the pseudoachondroplasia), or to go without children in life/or adopt… everything in my future will have an element of consideration for my condition and how I will be able to juggle the associated challenges alongside the general challenges of life!

The dwarfism won’t go away (sadly!), but far from making me ‘just a bit short’, it does that, and so much more… and I hope that my four blog posts of Dwarfism Awareness Month 2017 have given some insight to those who have read them, about the ways that such a condition can alter someone’s life! As always though, I’ll end this post reminding readers that if you do have any questions related to what I’ve written – or about my type of dwarfism in particular – please feel free to contact me via this blog, or email (rubysallen@hotmail.com) and ask me – after all, it’s an awareness month – a month for sharing the knowledge, so I’d be pleased to receive your messages!

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