Friday, 29 May 2015

Look and Stare, I'm proud to be Sabled

Having Muscular Dystrophy doesn’t always make my days go by with ease but in the last 19 years I have never stopped doing what I wanted to do.

I went to University and pursued to gain several degrees, I left and carved myself a career as a teacher and since then tried my hardest to be as active as possible for the boys; something that I would hope that you would see through the different activities that we do together.
Mentally I don’t see myself as disabled but quite often life likes to remind me that I am.

This can, at times, be tough but I am also incredibly stubborn and because of that I won’t stop doing the things that I want to just because I find something difficult; I have always had the attitude that there is always a way around things so I can join in.
The hardest thing for me was, and still is, how it would affect the Boys. I have, subsequently, always tried to push myself to be able to provide a relatively ‘normal’ life for them.

Recently I have noticed that William has started noticing that people look and stare at me when I am walking.
For him, as well as James, I have just always been like this, they know no difference. Yet, recently, William has vocally brought to my attention that he knows that people stare.

When we visited Walmer Castle last month William verbally stood up for me and although I am incredibly proud that he did this it did sadden me deeply that he felt that he had to.
The Castle grounds had beautiful shingle paths to walk through the garden. Shingles for me is like competing in the Krypton Factor or the Cube:

“The next Challenge Martyn must face is to walk across unsteady tiny stones over a 10 metre stretch without losing balance…..set the timer”

William is a great kid and has found himself almost in a ‘Carers’ role where he will walk with me and just make sure that I am O.K.
Whilst I was tackling the herculean challenge some children, with their parents, started staring, pointing and laughing at the way I walked. I could sense William was getting cross but there was nothing I could do apart from focus on walking and keeping balance whilst also making sure James didn’t walk to far ahead. This was fine until William shouted “This is my Dad, it’s rude to stare”

These children went red, their parents said nothing but they quickened their pace and hurried their children along with them.
(I am sure they were mortified and part of me hopes they were enough to have a conversation with them later)

I am used to looks and stares, sniggering, laughing and even the occasional pointing but my worst fears were realised that this transference had affected William.
We have two terms in this house “Sabled” and “Silly Legs”

Both of which were introduced by William at a young age and seemed to stick enough to the point that both boys now use the term.
‘Silly legs’ are quite apt as they are silly and at times with minds of their own. I have heard James recently just come out with “Yeah, Daddy has ‘Silly Legs’” when speaking to other children; which most children just seem to acknowledge as a given, reasonable, fact.

‘Sabled’ is literally anything.
“Daddy if I’m sabled like you I will play the Piano” or “Daddy if I’m sabled like you I want a fast car”

(This was when I told the Boys I was getting a new car on the Motability scheme)

I quite like the latter term as it’s never used in a sentence that makes me sound ‘weak’ it is usually an associated fact that means I do something else.
I recently read a great article by the Huffington Post about a girl with Cerebral Palsy where she made a powerpoint presentation for her school about living with a condition that means that people stop and stare. She spoke about how it isolates and upsets her and not because she feels like she is being targeted but because people judge her on that and not how able she is.

She clearly made the point that she doesn’t see herself as disabled but different and to the extent that she is just Diff-able.
I watched the Video and it brought a mix of tears and smiles.

Like her I am proud to be Sabled as that doesn’t limit anything that I do. I am sure I am more able to do something than others; playing the piano for example.
I will be showing William this Video with the hope that he can see that other people get looked at but they can also do more than what others can

How do you, as parents, address the questions that children have about people with disabilities?
 
The Dad Network

50 comments:

Sarah Howe - Run Jump Scrap said...

I feel proud of William reading this! It must have been hard for him but good for him. It must be tough but you sound like you have a great attitude and that will be rubbing off on the boys. You don't dwell, you just get on with it. I don't think you are ever going to change the ignorance of others but you sound like you are already on the way to have sensible, understanding boys xxx #bigfatlinky

mental parentals said...

Great post - what a lovely little boy you have! So understanding and sensitive, but knowing that there's always options. x

Cuddle Fairy said...

That must be really tough. It's good that you explained things to him. I tell my kids that everyone is different and that applies to abilities, race, opinions, everything. It's not an easy concept for kids to grasp though. Thanks so much for hosting #bigfatlinky

Sophie P said...

What a lovely post. You're boys are obviously so wonderful and very proud of their Daddy! :-) #bigfatlinky

Mummy Fever said...

What a wonderful little boy you have - clearly proud of his dad and loves you very much. We are all very protective of each other and I think that is always a reflection how the love we all feel for one another. Great post #bigfatlinky

Lisa (Mummascribbles) said...

What a fab little lad you have there - you must be so proud of him. Zach hasn't yet got to the stage where he notices anyone diff-abled but when he does I will remember this post and talk to him about it all. #bigfatlinky

Dot Makes 4 said...

What a great post- you must be so proud of your son :) so loving and protective of his dad :)
I think it's great that your sons clearly understand differences in people and know that it doesn't matter- which is a lesson that some adults don't learn!
#bigfatlinky

Sabrina Jillah said...

Oh my, how wonderful your boy is - you must be so proud. Children are amazing, how protective they are, they really are the future and can change perceptions. I know my boy is very protective of his grandad who has Parkinson's. Children don't see anything wrong, they just love and that is the best.
Sabrina xx #bigfatlinky

Kate said...

This is a very lovely, heartwarming post and what a lovely family unit you are x

Catriona S said...

This is was such a heartwarming read. Your son's sound like lovely little boys. I feel sad that he had to stick up for you, I wish people didn't feel the need to stop and stare, I'm also shocked the parents didn't apologise istead of picking up the pace to walk away #bigfatlinky

Alexandra Hurton said...

You have a wonderful son. This has been lovely to read. #BigFatLinky

Hannah Budding Smiles said...

Oh Martyn what wonderful boys you have and well done William for being such a great advocate. I have worked in special needs education for a decade so physical and learning disabilities are something I'm familiar with in that respect. I've come across some awful prejudices on behalf of my students and but I will continue to take Toby to my former work place as he becomes a toddler so that he can see that people with any form of disability can achieve just as he can. I'm also teaching him to sign, partially to alleviate some of his frustrations in the absence of speech but also so that maybe once day he'll be able to communicate with someone with a speech or hearing problem and ensure that they are not left out. That's my hope, anyway!x

Kim Carberry said...

What a fab boys you have! Good for William showing those people how rude it is to stare and laugh! What a heartwarming post!

alan herbert said...

A great post. Tinged with a hint of sadness that someone so young is wise beyond his tender years.
Thankfully my boys are not pointing and sniggering. They have had "sabled" children in their school as they have an Autisim unit and Buddy's best friends sister has downs.

You should be so proud of what a fine young boy you are raising Martyn.

International Elf Service said...

Oh Martyn - William sounds the absolute business and both your boys sound very proud making. I loved reading this - so well written as usual. I think being stared at isn't fun at all but I think it's natural to stare at anything different as that's how we learn and make sense of things. I read a post a while ago about a mother of a diffabled (love it) child. She wrote about wanting people to come and say hello and ask their questions rather than just stare and look away. That's obviously different in your situation but it would be wonderful if children could get proper answers to their questions. Fab post. #bigfatlinky

Ami Roberts said...

What a wonderful post! William is such a dude :) I love the way that children things. They have no prejudices or preconceived ideas. They are just loving and accepting no matter what. Think a lot of the adult population nowadays could do with having this mind set!
:)
#bigfatlinky

Talya Stone said...

What a lovely post - you have a brilliant outlook and I'm sure that it only feeding right through to your boys. I think that is the key for parenting right there - and that stretches to all issues, including disability #bigfatlinky

http://motherhoodtherealdeal.com/

Susan said...

What a fantastic post. Your boys make me proud. William sounds like a wonderful boy who has taken on the values you have instilled in him. Way to go dad!

Wander Mum said...

What a sweetheart William is! Such a great post Martyn. I think it's so important to expose our little ones to people who may be a bit different to them. I really love what CBeebies and Mr Tumble do in helping children understand children with disabilities. Thanks for sharing #bigfatlinkyx

Mother Mands said...

Great post! :) Good on you for not letting Muscular Dystrophy stop you from doing what you want to do, and good on your boys for having such great values (which obviously they've got from you). People can be really cruel, and its fantastic when parents can raise their children to care about others feelings and actually discuss the subject of disabilities. My own views have changed a lot recently, now I'm a lot more aware that people can be suffering internally, without people knowing or seeing anything, so we should all try not to judge and make assumptions about people on first impressions.

#bigfatlinky

Jeremy Barnes said...

sounds like a strong kid you are raising. You should be proud.

Mummybexm said...

A great post Martyn; so thought-provoking. Keep us up to date with how William gets on with the video and his thoughts x #bigfatlinky

Ashley Beolens said...

Great kids you have, brilliant to have William standing up for you, although I can understand you trepidation.

Something Crunchy Mummy said...

What a great post. And what lovely kids you have - to stick up for their dad to strangers. This has made me think about how I will answer questions the boys ask. Finley is getting to the age that he will stare and question so thank you for writing this as I need to get my response ready and know how I will talk to him about disabilities. He goes to preschool with a little boy who has cerebral palsy so I hope the nursery have also talked about this but ultimately it's my responsibility #bigfatlinky

Martyn Kitney said...

Thanks Sarah! I don't see anything different and I'm glad my two don't. It must be hard on him but I love the fact that he pointed out more their ignorance than my health.

Martyn Kitney said...

Thanks MP. I think that's what I want to install in them that abilities can be varied but there are always options.

Martyn Kitney said...

Thanks for commenting. I agree, I think it's difficult for kids to grasp it at times. My boys are lucky in some ways because of me that they see no difference. Outside that though there must be interesting for children to understand.

Martyn Kitney said...

Thanks Sophie. I hope they are. We're quite close as a family unit so I'm sure that helps.

Martyn Kitney said...

Thank you Mummy Fever. I think that's it. It worries me slightly that he might see people laughing and staring but the love between us makes us protective and caring.

Martyn Kitney said...

Thank you Lisa. I was immensely proud but I also don't want him jumping into arguments for others ignorance. Great, I'm sure kids are only interested in what's different but it helps to explain things at times.

Martyn Kitney said...

Thanks DM4 he is really protective of me which I love. I agree that it's something some adults need to learn too.

Martyn Kitney said...

Thanks for commenting sabrina. Aw how great that he's protective over him. You're spit on with the fact that when they're surrounded by health that they don't see it.

Martyn Kitney said...

Thank you. And thanks for reading.

Martyn Kitney said...

Thanks catriona. I'm proud that he did but it does sadden me that he had too. I do wonder though what the response would be if people really stopped and thought first. I was too. I don't know if this is ignorance or embarrassment.

Martyn Kitney said...

Thanks Alexandra.

Martyn Kitney said...

Thanks for commenting Hannah! I love that you're teaching Toby to sign too. I think children's involvements with other abilities is key to trying to break certain ignorant barriers.

Martyn Kitney said...

Thanks as always Kim. I'm extremely proud of him but it does sadden me that he had to do it. Especially with him being so young.

Martyn Kitney said...

Thanks Alan. That's exactly it. A mix between being proud and sad that he had to do something. Glad the boys have been surrounded by different abilities. It's only then that I think future generations will change what perception there is.

Martyn Kitney said...

Thanks Elf. William is a no nonsense child so won't tolerate it although saddens me that he does at a young age. I think it's good if people ask questions rather than stare but you're right sometimes it's the situations that are different that make people and including child more curious. Really pleased you liked the post.

Martyn Kitney said...

Thanks Ami. I couldn't agree more. I think if more adults were like this then certain perceptions would be dropped. On a plus side my two lovelies are always good to help.

Martyn Kitney said...

Thanks Taylor. I think you're spot on there. Right attitude and it can stretch to all areas of understanding.

Martyn Kitney said...

Thanks Susan. I hope to think it was me but I know that he sees people equally....I think he just hates people being rude full stop.

Random Musings said...

Go William! He told those kids what their parents should have been telling them. There is a certain in a honesty in a young child staring - they are usually interested rather than judgemental because they see something different, they tend to look, satisfy their curiosity, accept it and move on. The parents should be telling them this is rude though rather than joining in! Give William an extra big hug tonight! I think your attitude to this and that you don't let it hold you back is brilliant. #bigfatlinky
Debbie
www.myrandommusings.blogspot.com

Silly Mummy said...

Good for William.

In answer to your question, my girls are too young yet to have asked any questions about disability. However, I think that you need to give them an open & honest answer when they do. I think it is natural that children will sometimes point out disabilities - children are curious & will ask about anything new. However, children are also very accepting. So I think that if you just explain the disability & tell them that it is just one of the many ways that everyone is different, then a child will accept that. It is obviously wrong to encourage a child to be rude about disability; but I think it is also wrong to be embarrassed about a child asking & try to avoid the subject, as that will make the child think that disability is something wrong that they should feel awkward about. #bigfatlinky
risforhoppit.uk

Ashleigh Lawrence-Rye said...

It sounds as though William has a great understanding of your condition without being overly "fussed" about it - which is great. I agree with the comment above, children will be curious when they see something that is outside of their understanding of normal. My son is five and in the past he has asked me why someone walks with a stick, why someone is in a wheelchair, and we've had incidents where he has stared at people with severe learning difficulties because they are behaving in a way that seems very unusual to him. Thankfully, this has only occurred around very patient and understanding people and their carers. I'm very much of the belief that children are born with an enormous potential for tolerance and acceptance, and we've talked a lot about disability and Seb now tends to accept that some people's bodies work in different ways, that some people find it difficult to walk, some people can not see etc. As a complete aside - I live in Margate and absolutely love Walmer Castle - although I can imagine what a nightmare the grounds must be for you!

www.ashleighlawrencerye.com

Sussex Mummy said...

Well done William for looking after your Daddy and dealing with those mean people so well. An important lesson for us all. Never really thought about explaining disabilities to my boys. I guess I have to wait until they ask. They've seen people in wheelchairs etc but it's never raised a comment from them.

You must be super proud Martyn that you've raised such mature caring boys.

Claire Toplis said...

glad you are my sabled friend

Candace said...

A beautiful inspiring post and such wonderful boys you have. I've always tried to overcome my disabilities but thereafter times the crutches or wheelchair come out and people do stare and make snide comments. My daughter has physical disabilities too and it worries me what she will face in the future.

I'm not sure if people stare or comment out of ignorance, sheer stupidity because they don't think it plain rudeness. Whichever it is it shouldn't be happening.

I'm on the process of writing a similar post about people's attitudes to didabled people after some dogooder told me my daughter didn't look sick yesterday. Unknown to them she was walking around ok drugged up to her eyeballs on codeine and no parent would give that to a well child.

You must be so proud of William standing up and saying something but it's such a shame in this day and age he has to.

Jaymee said...

This is the first post of yours I have read! and I must say William sounds like a great kid!

My Nephew has cerebral palsy and we were told he would never walk, we fundraised to raise £60k for an op which literally changed his life and gave him the ability to walk independently. of course when he walks it is noticeable, he walks with a limp and he gets tired easily.
In the earlier days Jack (7) my eldest, he was about 4 at the time and my nephew was 8 asked why he walked funny. My nephew stood proudly and said "This is my walk, you walk like that I walk like this!" Jack shrugged, looked at him and just said "ok"

Clare aka Emmy's Mummy said...

Your boys are absolutely wonderful but it's a lot to do with the way they've been raised. A real credit to you