Not short of something to say

Article about Young Disabled Campaigners in Disability Now

2012-01-26T04:39:00.000-08:00

Have a look at the article I wrote for Feb 2012 Disability Now magazine about young campaigners, as mentioned in my previous post.

They are a fabulous bunch of young disabled people:

http://www.disabilitynow.org.uk/living/features/meet-the-future-young-campaigners-on-show/

If you get the chance the article looks even better in the printed version....

New Year New Motivation

2012-01-23T05:05:00.000-08:00

I love the beginning of the year as I'm all motivated. In fact I've been so busy my New Years Resolution of making sure I write one blog entry a month [surely I can do that?] nearly fell by the wayside...

Already this year I've written a great article about young disabled campaigners for Disability Now, it great because it features some fab young people who have already done a huge amount to try and improve the lot of disabled people, the youngest started campaigning at 10 years old. How's that for inspiration.

The only shame of the article is that it won't reach a wider audience as it's the sort of thing I'd love to see the Guardian going for, showing the wider public how positive and brilliant young disabled people can be. They are as far from loitering around street corners, moaning, scrounging benefits [as the Daily Mail would have you believe] as you can get.

I've also been doing a massive clear out, there's not a drawer, cupboard or box in my house that I don't know the contents of now. What I love about doing this is not just the recycling and decluttering element but finding things I'd forgotten I had. The whole process has made me feel very positive and sorted in more ways than one.

This feeling also ties in with the fact that I have after over 7 years of primarily looking after children embarked on a course, just for me! It's a Certificate In Counselling course, the idea is to see whether I like studying again and if I like the subject of counselling, then if I do I could potentially take it further.

Even after just a few weeks of the course I'm really enjoying doing something new, and that together with reading a book about being more assertive could possibly mean I end up a whole new woman by the end of 2012, watch this space.

Raising children fairly/equally

2011-11-20T10:53:00.000-08:00

I was momentarily put out recently when a relative suggested that I didn't treat my children equally - one is disabled, the other is non-disabled.

Fortunately I am confident enough to know that in fact I spend a lot of time and energy making sure that I do indeed treat them as fairly and equally as I can, being more than aware that it might be possible to favour one over the other.

It really brought it home how wrong an 'outsider's' [even if they are a relative] perspective can be when it comes to understanding what a hugely difficult job bringing up a disabled child is.

Here are some of the issues we have to deal with [most on a daily basis]:

- finding a balance when it comes to dealing with 'normal' behaviours eg rough and tumble play. Whilst we don't want to deprive either child of this there has to be a line when one child [most likely the disabled one] is more likely to get hurt.

- dealing with the psychological effects of having a disability eg the child might be upset that they can't keep up with their peers, they might feel left out in the playground, they might feel angry with themselves for not being able to do something or for falling over.

- dealing with the psychological effects of being the 'non-disabled' one eg resentment that we're not doing something because of the disabled sibling.

- grappling with the effects of an imbalance in height, strength, mobility and ability between the two children.

I once read the term 'juggling with chainsaws', sometimes it feels like that's exactly what I am doing, and I worry that getting it wrong could potentially have long term effects on both children's wellbeing, attitudes and personality. That responsibility is stressful to say the least.

Because it's such a difficult job I have an enormous amount of respect for fellow parents up and down the country who, unseen and unpraised, are doing this job on a daily basis only they know what it's really like.

Disability hate crime

2011-06-21T01:48:00.000-07:00

I was sent my monthly e mail from Mencap [a charity supporting people with learning difficulties] which highlighted the fact that this week is Learning Disability Week.

As part of the week Mencap is launching its 'Stand By Me' campaign to stop disability hate crime.

Yes in this modern world we still have people who will pick on, harass and even murder people based on their perceived ability. That fact is nothing short of shocking really and what it has to come down to is ignorance.

For starters children don't get taught about disability much in schools. Then cildren and adults often don't have a lot of contact with people with learning difficulties [or disabled people generally for that matter].

This lack of education and contact turns into prejudice, which is when unfavourable opinions or thoughts are formed without knowledge, thought or reason...

Until children and adults are really educated about disability this will be a never ending problem.

To find out more about Learning Disability Week:
www.mencap.org.uk/news/article/it-s-learning-disability-week

The Disability Balance... guilt, cold swimming pools and school PE

2011-05-19T14:04:00.000-07:00

Dealing with disability is such a precarious thing sometimes.

Although I try my damnest to treat Archie [who has Kniest] and Ben [who doesn't] fairly I'm probably a bit more lenient with Archie. For example I'll ask Ben to put his clothes away and tidy his room but often I'll do both these things for Archie. I guess I'm just trying to make his more difficult life a bit easier? Perhaps it's a guilt thing.

Guilt does indeed rear its head every now and then. Take tomorrow - it's the annual opening of the [outdoor] swimming pool at Archie's school. At bedtime Archie said he didn't want to go to school tomorrow, which is most unlike him, he LOVES school.

When I asked why, it was because he didn't want to go in the pool because it was too cold. Ben chipped in and said if you move around enough it won't be cold [the sort of thing I'd say when they are in a pool...] but Archie said it doesn't make any difference and I believe him. I always remember being freezing in swimming pools when I was young, however much I swam I would still turn blue.

The thing is do I just hold up the disability card or not? It's not great for him just to be a spectator but if he can't do it then is it cruel to push it? What I do know is that the last thing I want is for Archie to dread school for such a reason.

I think another problem is that most of his classmates are probably swimming without armbands and the like now, and that will set him apart. Although Archie is having individual, weekly lessons he is a long way off being able to swim because he lacks the sheer strength to be able to do it.

Whilst in the old days it was easier to just play the disability card and sit on the sidelines, nowadays PE/Swimming is part of the national curriculum and they get graded in it, so of course Archie is currently graded a 'below average' D, well I never.

This may change as someone is in the process of redefining Archie's PE curriculum but generally I think it's a bit of a farce. Of course it's great for kids to do PE, get a bit of exercise etc but what's the point of marking them on it? Anyone know?

NEW! Rough Guide to Accessible Britain - Family Days Out

2011-04-12T11:01:00.001-07:00

I've been involved in publicising the 'Rough Guide to Accessible Britain - Family Days Out' a new online resource featuring over 75 places to go for a great day out! See an introduction to the guide here: www.accessibleguide.co.uk/familydaysout/ Scroll down to read my blog entry 'Magical Days Out' on: www.accessibleguide.co.uk/daysoutblog/ And see the short promo film on the Independent website, click on the 'Travel' tab and then 'Rough Guide to accessibility: www.independent.co.uk/news/Video/the-video-channel-2190639.html Please do spread the word about the guide as it's a great resource - you can search for places to go by geographical area or by access criteria. So whether you are planning a holiday in Britain or a day out close to home it's definitely worth a look.

Disability and the 2011 Census

2011-03-10T11:57:00.000-08:00

I got my census yesterday and it was all very straighforward until I got to question 23 - Are your day to day activities limited because of a health problem or disability which has lasted, or is expected to last, at least 12 months?

My first problem with this question is that health problems and disability have been lumped together. Having a disability doesn't necessarily mean you have a health problem and visa versa.

My second problem was the utter subjectivity of the answer options:
yes, limited a lot
yes, limited a little
no

Well I knew no wasn't the right answer but does my disability limit me a lot or a little? I found that impossible to answer. Am I just supposed to use my own judgement, am I supposed to be comparing myself to others or should I be answering with a view to the fact that they are supposed to be using the results to plan services?

Why on earth couldn't they just be direct about it as they were with the ethnicity and religion questions?:

Do you have a health problem, yes or no?
If yes, is it heart related, asthma, cancer etc?

Do you have a disability, yes or no?
If yes, it is a mobility, visual, learning etc disability?

It just makes me think that they aren't in the slightest bit interested in collecting any useful information or statistics about disability at all because given the question they just won't get any useful/accurate information it's just too woolly and subjective.

Children's book about disability...

2011-02-08T04:06:00.000-08:00

I've written a non-fiction book about disability primarily for teachers teaching 7-11 year olds.

About 2 years ago I sent it off to several publishers, some replied saying it didn't fit into their current lists, others didn't even respond. Now with several house moves and a house renovation out of the way I've decided to revisit the idea and send it off to a few more publishers.

Although there are some teaching resources about disability they are either quite old or along the lines that disability is 'special'. I'm hoping my book is different - it is based on the social model of disability [where barriers in society present more of a problem to disabled people than their disability per se] and it includes lots of excercises to engage children and generate interest, insight and knowledge.

If children understand and accept disability that would be such a huge step towards eradicating poor attitudes and discrimination towards disabled people in later life.

The trouble is that disability is hardly the glamourous, wacky, trendy subject that publishers really want but I know there is a need for this I've just got to find the right publisher who can see there is something in this... Any publisher suggestions would be welcomed!

Being a parent

2011-01-18T11:23:00.001-08:00

Being a parent is no mean task. Fact.

Add to that being the parent of a disabled child. Some days I feel juggling with chainsaws might be easier.

All parents want their children to have friends and be popular. Nowadays, to encourage friendships to form children go on 'playdates' where they go round to a friends house after school or a friend comes round to their house. This scenario poses a dilemma for me because my son Archie, who has the same disability as me, often comes home from school practically dead on his feet.

Sometimes he can get through the whole thing purely on adrenalin, other times it's all too much and watching him struggle and the resulting frustration is so hard sometimes.

I'm just hoping that as he gets older his stamina will grow, but I do fear that his peers will always be a step ahead of him... There doesn't seem to be much guidance on these sort of parenting issues - maybe I should be writing THAT book, but do I actually know any of the answers?

A philosophical disability question...

2010-12-07T01:38:00.000-08:00

Yesterday my now 6 year old son Archie [who has the same disability as me] asked me if I was disabled when I was a baby? The question had me slightly stumped because of course I was born with my disability but as a baby was I strictly speaking a 'disabled baby'?

OK some of my milestones might have been later than 'normal' but whether that really affected my then quality of life or justified being stamped with the label 'DISABLED' at that point I wasn't quite sure?

When does disability per se kick in? Is it when you start slipping away a bit too far from the norm [medical model of disability]? Or is it as you are increasingly subjected to a world that isn't accessible to you [social model of disability]?

NB The Medical Model of Disability is where the person's disability is blamed for what they can't do and the solutions are mainly medical eg surgery, physiotherapy and the like. However many Disabled people prefer the Social Model of Disability which refers to the way that they are more 'disabled' by society - by a lack of access, poor attitudes and bureaucratic systems.

Take Archie - he is now significantly shorter than his peers but of course this only becomes an issue in an inaccessible enviroment.... His most obvious difference now as a 6 year old boy is that he is significantly less mobile than his peers which means he's increasingly likely to be left out of riotous playground games and perhaps this is the sort of thing that will make him feel disabled?

I think it's probably fair to say that his experience of being a disabled child is starting to kick in more now and the interesting bit of how to deal with that [positively] is yet to come, tips on a postcard please...

Work life balancing act

2010-09-30T11:22:00.000-07:00

Gosh what a neglected blog... Probably due to my new laid back approach of not pretending I am 'super disabled mother housewife writer' all rolled into one anymore.

Actually the only thing I have cut right down on [as I can't really cut out all the other roles] is the writer one. I found trying to work on top of trying to do everything else [including overseeing a house renovation] was tipping the balance for me.

I think for a while I was trying to prove I can be like all those amazing [non disabled] working mothers but I realised it was making me unhappy and TIRED.

Now my youngest is going to pre school more I do have more time and the idea of working is creeping back into my consciousness. But I'm going to make sure that I don't take on too much and slip back into trying to be 'disabled super mum' - it makes a great story on the surface but if underneath it makes you unhappy what's the point?

Dancing on Wheels - BBC Three - The worst thing on TV

2010-02-22T04:36:00.000-08:00

After the marvellous disability TV high of How to Look Good Naked - with a difference [Channel 4] where the fabulous Gok Wan worked with 3 disabled women to make them feel better about their bodies/disability we have plummeted to an all time TV low with Dancing on Wheels [BBC Three].

For those of you lucky enough not to have witnessed this awful programme the series follows 6 wheelchair users who have been partnered with 6 non disabled celebrities, the winner will go on to represent UK in Wheelchair Dance Sport European Championships in Irael in the Autumn [come on you must have heard of this competition the press are surely all over it every year....].

It's hard to know where to start with what is wrong with the series.

Firstly the 'wheelchair using contestants' are not people who have been honing their wheelchair dancing techniques for the last however many years, they are just wheelchair users who presumably fancied being on telly.

On the plus side some of celebrities have managed to get a bit of dancing practice on Strictly Come Dancing [BBC1] but none of them were winners, so it's hard to see how they should now be expected to become great dancers especially when given the added obstacle of dancing with someone who is sitting in a wheelchair.

So you have two people, neither of which is a professional dancer, who are given a bit of tuition by Strictly Come Dancing dancer Brian Fortuna, obviously he can't tutor them 24/7 because he has to tutor all 6 couples... Then after a bit of practice each couple perform their dance in some sort of derilict warehouse which they've spend £2.50 on in attempt to make it into a set. A few friends sit around on crappy chairs while the judging panel sit at some sort of makeshift table. It's all so cheap and it's definitely NOT Strictly.

The judging panel discuss who is the best of a bad lot and the 2 couples at the bottom of the pile have to inflict their dance on us all over again before being given the boot in a not very gripping final vote.

The lowest point of the programme I saw was when the celebrity was weeping over her poor disabled partner setting back the image that disabled people can actually 'have quite a good life thank you very much' by decades.

I wonder what insight they were hoping the series would give us into disability? Whatever it is I'm not getting it and I'm hoping everyone is way too busy watching Eastenders to bother trying to work it out.

Helen Rumbelow's review of the series in the Times did make me laugh, spot on:

http://entertainment.timesonline.co.uk/tol/arts_and_entertainment/tv_and_radio/article7023784.ece

Emotional wreck...

2010-01-18T14:35:00.000-08:00

I feel like an emotional wreck tonight. Just watched Channel 4's 'Slumdog Secret Millionaire' where a London based millionaire goes over to Mumbai to see how the other half live - working on rubbish dumps and sleeping on the streets...

I then watched a video on the BBC news website of 2 children being dragged out from the carnage in Haiti. 5 days they'd been trapped.

Then earlier today I was sent an email from LPA [Little People of America] c/o an e mailing list I belong to for short people which features a list of children including:

2 year old Dillon - can count to ten and is already potty trained. He brings a smile to everyone around.

Adorable 6 year old - favourite things to play with are cubes and cars. He wants very much to belong to a family.

Boy 10 - desperately needs a family. Once he hits 14 Chinese law forbids him to be adopted.

The list actually goes on and on. These are all children who are waiting to be adopted. And what do they all have in common? They all have some form of short stature so they have been placed in homes, orphanages, call them what you will because they have been rejected by their families probably because of their disability. Most were in China so I guess they have been given up because that isn't the 'one child' the parents want.

If we think we still have a long way to go in terms of awareness about disability in this country I guess it's nothing compared to the countries these children have been abandoned in.

Tesco's response to their appalling disability access at their Newton Abbot petrol station...

2009-12-11T11:13:00.001-08:00

Here's Tesco's response to my complaint about the appalling lack of access to their petrol station in Newton Abbot sent to me on 10 Dec 2009:

Thank you for waiting for my to your enquiry about the Newton Abbot Petrol Filling station and the adjustments you would like to see in place.

I have contact our Business Support team andthey have advised the below:-

There is currently no additional rule in the DDA for outdoor payment terminals at pumps provided our standard DDA "reasonable adjustments" are met. Our reasonable adjustment is to use the Service Call facility which enables customers to call for assistance from the kiosk. We do not offer the Service Call facility at times when a PFS operates unmanned, and this is deemed as acceptable.

We have to have the PayatPump terminal at certain heights due to explosion zones and restrictions on the pumps - there must be a set vapour barrier distance between nozzles, motors and electronics which cannot be altered. We have designed the current PayatPump terminals to accommodate our varied pump estate and meet the requirements of the petroleum regulations.

As for the step, we can look at getting this removed and having a ramp fitted this has been pass to the correct area of business.

I hope this helps and thank you for you enquiry.

One of the key problems with the DDA [Disability Discrimination Act] is that service providers use 'reasonable adjustment' as a get out clause rather than providing a truely equal service to all its customers.

So in this instance disabled people have to buy petrol in a different way to their peers.

I hadn't realised before but you actually have to pay for a 'Service Call' transmitter - so let me get this right in order to buy petrol at a petrol station that they haven't bothered to make accessible I have to PAY for that privilege?

How would non disabled people feel if they had to pay to use a petrol station in this way? OK it's only £14.95 but it's £14.95 that non disabled people don't have to pay and surely if anything the inaccessible petrol stations should be giving out these transmitters for free it's not my fault the petrol station isn't accessible.

Also as the response points out 'Service Call' doesn't always work and there have been many many complaints from disabled people that people working in petrol stations don't recognise it or ignore it anyway.

As for the response about the 'pay at pump' machines, step in the old 'safety' excuse.... whilst it is possible there are certain rules/regulations about this I am sure there are also ways round it to providing an 'accessible to all' solution. You can't tell me that you can't position the machine at a suitable distance at a suitable height next to the pump for example?

The bottom line is that disabled people in spite of their £80 billion/year income are still regarded as second class customers who don't have the political clout that other minority groups do.

To put it in perspective what would be the reaction if petrol stations said Black people or women had to use petrol stations differently to the rest of the population? Enough said.

Disregard of disability access eg1 Tesco's petrol station

2009-11-06T09:38:00.000-08:00

I went to a petrol station today [Tesco's by the way] which has installed pay at pump facilities. This would be all well and good if they were at a height I could reach.

To add insult to injury there's no way of avoiding having to access the panel because you have to press a button on it to declare whether you want to pay at pump or at the kiosk.

To acheive this I have to precariously balance on a ledge, pulling myself up on the bottom of the pump to reach my choice. Physically I can do it, just, but it's also the sort of manouvre that could easily go wrong and cause me an injury.

Tank filled I went to pay. I was then greeted by an enormous step into the shop. Great.

I asked why on earth they didn't have a ramp and was told that the council were aware of the issue and are doing something about it - er just how long ago did the DDA [Disability Discrimination Act] kick in? 1995, yes that's a wopping 14 years ago.

I then stated that the pay at pump facility isn't accessible either - "ah yes, we've got round that one by having service call". I believe this is some system where disabled muggins has to sit in their car and wait for help, presumably not possible in the dead of night [yes disabled people do go out at night] when there's only one person locked into the petrol station kiosk.

I'm sorry this isn't an acceptable solution for me - I don't want to have to rely on someone else to do a task I can do myself anyway. The solution is not to install the pay at pump facilities at an inaccessible height, hardly rocket science and it wouldn't cost the garage any more either.

Archie starts school

2009-09-13T11:45:00.000-07:00

Well it seemed like yesterday that our little scrap of a baby was born and this weekend marked the end of his first week of primary school. Next week the real test begins as he steps up from going half days to all day, I'm not sure what that will do to him on the tiredness front...

The transition has been amazingly smooth, I guess we have to credit Archie [and maybe ourselves a bit] that he is confident enough and articulate enough just to step into a new environment and get on with it. What was crucial was that it was the right environment for welcoming and dealing with a disabled child.

The school has risen to the challenge with thought and enthusiasm which has been great. They asked my advice on how to explain Archie's disability to the other children and they have also consulted with Mike and myself about how to get round various access issues eg using the toilet.

They are going to get in an OT but we have been quite clear that we don't want him to have any 'special' [spazzy looking - as it always is] equipment. So far so good really.

What's clear is that Archie is set to become his school's internal celebrity - Mike says whenever he picks him up all the children [even the older ones] are saying goodbye to him, using his name. I do hope that in a way the fact that they have Archie in their school means that all of the pupils there will at least have a bit of understanding about disability that they might not have done otherwise.

Two Little Boys article in Sept 09 'Junior' magazine

2009-08-22T13:23:00.000-07:00

Check out my latest article in Sept 09's Junior magazine. The article talks about my experience of having one disabled and one non-disabled child and is accompanied by some nice photos of all of us.

http://www.juniormagazine.co.uk/news/article.asp?UAN=209

We're just about to move again, Archie is due to start school and Ben will start a new preschool once the dust has settled I'm hoping to get back into writing a bit more... watch this space.

A cover girl at last!

2009-07-09T14:50:00.000-07:00

It's not quite Vogue or even Cosmo but Archie and I are on the front cover of the Summer 09 edition of Transport for London's magazine 'getting there'.

The photo of me on my mobility scooter with Archie beside me relates to the article I wrote in the magazine about mobility scooters, profiling 4 scooter enthusiasts. So if you get the magazine have a read - otherwise I'll try and sort out a link!

In spite of having to turn my attention to house renovations at the moment I'm still managing to keep some brain cells working by writing some articles and I must admit I do get a kick out of it which is great; I really want to be one of those people who loves what they do for a living rather than someone who just moans about their job.

Once I've got the new house sorted, [deadline Christmas?] Archie installed in school and Ben in preschool [both deadlines Sept] I should be able to find a bit more time to develop my writing even further. Watch this space.

Society Guardian online article about young carers

2009-07-05T14:51:00.000-07:00

Been so busy trying to sort out house renovation plans that I forgot to post my latest Guardian offering:

http://www.guardian.co.uk/society/joepublic/2009/jun/26/young-carers-support

Have a read and make a comment....

3 Articles in the Guardian this week

2009-06-20T00:21:00.000-07:00

Check out my 3 articles which were in the Guardian this week:

http://www.guardian.co.uk/beyondboundarieslive

My articles are headlined - "The ratings game", "Independent thinking", "Willing and able" about education, independent living and employment respectively.

Channel 4 'Born to be Different' - more story, less recap please!

2009-05-28T10:22:00.000-07:00

I watched a couple of C4's 'Born to be Different' [BTBD] programmes last night, which I'd taped a few weeks ago. Given that there is so little about disability on TV I always keep my fingers crossed that what is on will do justice to the subject.

The trouble with BTBD is that each programme is basically a recap of each child's life with an added sentence or two to move their story on per programme. The series delights in graphic operations and if you missed them don't worry they are definitely part of the recap. How about more story, less recap.

It's such a missed opportunity as there are some great disabled children in the series and some amazing parents too, in particular Shelbie's mum Vicky - how she kept it all going on her own initially with 4 children, one of who was quite ill...

And whilst many parents might comply with the consultant suggestion that Vicky should basically agree to let Shelbie die at the next opportunity - he would have done it ages ago [well thank god you don't have a disabled child then] - Vicky looks at a very well cared for Shelbie and says she still has plenty of life in her yet.

The thing is that people who don't have disabled children just have no idea what it is like to have one; you don't just snuff them out because they are a bit of a practical or physical hassle or [hopefully not] because your consultant says he would have done it ages ago.

Having a disabled child is an emotional rollercoaster, you get lows but you also get highs. You get a sense of that in BTBD but I just wish you could get an even greater sense of the lives of disabled children and their families rather than wasting so much time on recaps and showing us graphic operations.

When I grow up....

2009-05-18T01:50:00.000-07:00

Archie has decided he wants to be a space shuttle driver when he grows up and Ben is going to be a police car driver. Oh great.

Given that he'll probably end up around the 4ft mark I'm kind of hoping that he'll be changing his future career every week and will eventually settle on wanting to be something that he can be, rather than something that you have to be ultra fit and probably a certain height to do...

We might have to spend the rest of his childhood avoiding a trip to Cape Canaveral in case that fuels his enthusiasm for the job even more.

Bouncy castles

2009-05-12T12:35:00.001-07:00

We went to a fabulous children's party on Sunday, the children loved it and I had a nice relax with a few glasses of red wine whilst chatting.

It was interesting to see how far Archie has come in the last year or so. A year ago he wouldn't have strayed away from either Mike or myself, if a child had approached him he probably would have cried and he would never ever have wanted to go on a bouncy castle if anyone else was on there.

Now it's a completely different ball game. Half the time he was off chatting to other people and mingling with other children, the other half of the time all he wanted to do was go on the bouncy castle and he didn't care how many children were on there.

Of course this leap of confidence is brilliant but poses a dilemma because half the posts I read on the SED/Kniest mailing list I belong to are about neck instability and children needing fusions of the neck bones to increase its stability.

An unstable neck is not a good thing. If something goes wrong at that level... it doesn't bear thinking about really. It just comes back to that balancing act - wanting Archie to have a normal life, doing what his peers and his younger brother are doing, and not wanting him to injure himself.

I often try to be a laid back parent and it's normally only after the event that I go into a 'oh my god what if XX had happened'.

Since the party Ben has also started trying to do head over heels, he obviously saw another child do it... now if Archie tries to get into that activity I really will need more than a few glasses of red wine.

New 'Rough Guide to Accessible Britain' available now

2009-05-06T12:57:00.000-07:00

After reviewing the first edition of the 'Rough Guide to Accessible Britain' for OUCH last year, see: http://www.bbc.co.uk/ouch/features/the_rough_guide_toaccessible_britain_review.shtml I was asked to write a couple of reviews for the second edition.

So 'en famille' we checked out the Abbotsbury Swannery and Sherborne Castles, both in Dorset. The Castles are more of a 'grown up attraction' but the boys thoroughly enjoyed the very accessible swannery - seeing the multitude of birds at close range, wandering along very flat paths and swinging on the rope by the 'bouncing bomb'...

The guide is even bigger and better than last year and is available from http://www.accessibleguide.co.uk/ - it's free to blue badge holders. If you do get a copy check out the rather dinky photo of Archie and me on page 97!

Growing confidence and growing up

2009-04-22T12:40:00.001-07:00

There are a lot of attributes we'd like our children to have but when you have a disabled child I think one quality you hope for is for them to have confidence.

Having just moved house again Archie has had to start at another new preschool. But thanks to having been at a superb preschool in Devon which built his confidence levels up no end he has just taken it right in his stride.

He wasn't at all fazed about being left with people he'd never met before in a new setting and actually complained about having to go home on the first day, and I don't think he hates being at home!

The great thing about being where we are now is that Ben is also able to go to preschool for three sessions/week even though he isn't quite 2 and 1/2 yet.

When I left them for that first session together I felt really happy because they were both happy to be left - that made me feel like I'd done something right - I'd managed to produce two children who had enough confidence to do their own thing and who had complete trust in me ie that I was going to come back for them as I told them I would. There wasn't a tear in sight - a far cry from the image I had had of leaving my children at a school for the first time I have to say!

Growing pains

2009-04-03T12:13:00.000-07:00

Archie, my short statured son, is on a bit of a munchathon at the moment - I'm not sure whether it's a growth spurt or whether he has decided if he eats more that he'll grow more - an idea that might have been installed from reading the book 'Marvin Wanted More', about a sheep that wanted to be bigger so he ate and ate and ate. [In fact Marvin wasn't happy being gigantic but I think Archie has ignored the moral of the tale at this point]

He talks a lot about being bigger and about how other children are bigger than him. He also asks questions like "when do we stop growing?", "if I don't eat or drink anything I won't grow will I?"

Whilst I want to encourage him to eat I don't want to lie to him and say, if you eat all this you'll be 6ft tall when you are older. It would just be a lie. I guess the thing is to make sure he enjoys eating and doesn't worry too much about the outcome. But it feels inevitable that he's going to notice more and more that he's smaller than his peers - something I just can't remember feeling when I was young at all... maybe I was just a bit thick!

Appreciating my mobility

2009-03-15T14:23:00.000-07:00

Three weeks ago I was pretty much karate kicked in the knee by my beloved 2 year old who was in a strop.

I didn't think that much of it until I could't walk. Even 6 days later I still couldn't walk. I went to A&E who were fascinated by the fact I'd had a baby - er hello I've hurt my knee....

They thought I'd cracked the tibia but a visit to the fracture clinic a few days later confirmed I hadn't. The explanation given was 'bone bruising' which my partner Mike referred to as a fob off.

Two weeks later I was still hobbling albeit on crutches, that I had sent to me from storage at Mike's parents, as A&E didn't have any small enough for me. Umm. In desperation I double the dose of anti-inflammatories and it's like a miracle cure. I keep pumping myself with them and find I can walk again which does seem to knock the 'bruised bone' theory on the head.

The morals of the story are:

- Don't let your two year old kick you in the knee [or anywhere]
- If you have a rare disability you pretty much need to suss out your own diagnosis and treatment

In fact the biggest thing I've learnt from this episode is that my mobility might not be great but it's a damn sight better then when I've been kicked in the knee and having to hobble around in excruciating pain on crutches...

CBeebies disabled presenter

2009-02-16T10:49:00.001-08:00

Of course she might not describe herself as a disabled person... but I caught a glimpse of a very animated new CBeebies presenter today and all of a sudden noticed she was an arm amputee. Of course Ben, my 2 year old didn't notice, although interestingly he did remember her name when he saw her again later in the day.

When I googled to find out more about her it was interesting. Some posts were from parents not knowing how to answer their offsprings questions eg how does she cut up her food, get dressed, what happened to her etc.

Others were from people saying how great it was just to have a disabled person presenting, getting youngsters used to the idea of disability in a very casual way.

The rest were from people saying how attractive they found her because she was an amputee... devotees. See previous post.

Disabled presenters are not new to BBC Children's TV - Ade Adepitan being the best known example but they are rare/non existant for no valid reason on adult programmes. The big question is when are we going to see equivalent presenters on adult programmes because it's actually adults that are more prejudiced and ignorant about disability, children just accept it.

The perils of being disabled on Facebook

2009-02-09T13:42:00.000-08:00

Like many others I eventually succumbed to the lure of Facebook and have steadily built up my list of friends - some are great friends of old, others I have met more recently, mainly through work.

The danger I've found of being open about your disability on facebook is that you can attract 'devotees'.

For those of you not in the know 'devotees' are apparently aroused by disabled people not because of their vivacious personalities, sharp wit, intelligence or flirtatious nature, but purely because of their disability.

Perhaps devotees think they are doing us a favour because they think no one else will go for us. My personal experience is that there are plenty of very 'normal' people who do want to go out with disabled people because of their positive qualities, rather than just because they have a disability.

There's far more to me than my disability so when a 'devotee' picks me out and asks me to be their friend it is really not flattering in the slightest. Ironically in my younger, less experienced and at times more deparate days I might have been flattered.

Nowadays it just seems perversed that someone should pick me out when they don't even know me and for some reason has the audacity to think I might be so desparate as to sign up to be their friend. Who's the saddo, not me.

Finding an accessible home - what a nightmare!

2009-01-29T10:12:00.000-08:00

We're currently lucky enough to be living in a very modern, spacious, single storey home, in fact it was built on Grand Designs so you can imagine what it is like - think lots of glass! Unfortunately it has also recently been sold so we have to move.

This is actually the first time in my 38 years that I've lived in a house without stairs, I'm not sure why it's taken so long for me to realise that it is a good idea. At least in our house in London we did fit some stairlifts, just as well as there were 4 flights of stairs...

Having to rush to find an accessible home is not a situation I would recommend. We've had to stretch our search to two counties to increase the likelihood of finding somewhere.

The problem is that single storey homes are near next to impossible to find. When I say single storey I'm thinking of the more modern concept of single floor living, more 'Grand Design-esque' than bungalow...

Bungalows you see seem to be a very different beast to what might be described in estate agent speak as a 'single storey home'. I've only seen one property described as bungalow that was spacious, modern, inviting and that was a new build. Most seem to be stuck in some bygone age, multicoloured carpets, borders halfway up the wallpaper, pink bathroom suites... arggghhhh.

Anyway better get back to house hunting...

Am I bigger yet?

2009-01-08T09:00:00.000-08:00

Archie is now 4. I've told him he is a little bit bigger now he is 4 but I get the impression he had expected to shoot up on his birthday. Indeed on the day he asked "can you see me growing bigger"...

He is now increasingly aware that although he might be older than some other children, including his younger [but not little] brother, he isn't bigger than they are.

I find it's a balancing act - not wanting to make him have a hang up about his height whilst at the same time not wanting to pretend that he will end up as big as everyone else when he won't be.

The bottom line is that he could do just fine in life if it wasn't for the prejudice that exist in others....

The Power of the Internet

2008-12-10T11:08:00.000-08:00

When you have a rare condition [and/or a child with a rare condition] the internet is such a powerful tool for finding others with the same condition. That can then be an amazing source of information, support and comfort because having a rare condition can be quite an isolating experience.

As Archie's broken a few bones recently I e mailed an e mailing list for people with Kniest/SEDc and asked if this was a common occurance, seems like it is. Although I'd rather he didn't break bones, knowing that it is 'normal' for some Kniest children [wasn't a regular occurance for me I have to say] was reassuring.

I've also come to realise through belonging to that group how lucky we have been with Archie in terms of him being able to walk, as there are other children with Kniest who can't walk or who use wheelchairs. I'm not sure how much that has to do with the fact that we never contemplated the idea that Archie wouldn't walk, because I can walk. And I wonder how much can your expectations of a child's development can influence their final ability?

Mistaking child abuse in disabled children

2008-11-18T14:59:00.000-08:00

The case of Baby P is too awful for words. A case of deliberate, willful obliteration of an innocent life.

Before the case came up I had been thinking about whether there was an article waiting to be written about the issue of how parents of disabled children are wrongly accused of child abuse, apparently it does happen.

The reason I'd been pondering the issue was because my son Archie, who has Kniest Syndrome, had recently broken two fingers in a fall. A few days after the fall we realised that something wasn't quite right. A trip to the doctors lead to the diagnosis that it was very very unlikely that the finger was broken as he was using that hand, indeed it looked like he was.

But watching him closely after the visit to the doctors I realised he wasn't using those fingers at all and he would really scream in pain if ever he/we caught them accidently eg through picking him up, dressing etc.

At A&E the doctor was asking him about it and he was saying "sometimes they hurt when I catch them and sometimes when daddy does" - it was an innocent comment that could have been laid open to a different interpretation. It transpires that he had actually broken two fingers poor mite.

So far he's broken a leg and two fingers, [possibly in hindsight after the finger experience] a thumb too. I asked some fellow mothers of children with Kniest whether their children had also broken limbs and it wasn't unusual. The root of the problem is the inflexibility of the joints but it's quite scary going to the doctors/A&E with an increasing list of broken bones.

I can't imagine what it must be like to be caught in the net of mistaken child abuse of a disabled child, perhaps I should write that article and find out.

What do you do when your toddler is nearly as big as you?

2008-10-15T10:02:00.000-07:00

Not a question the majority of people have to even consider.... But one I've been faced with this last week or so as we've just moved house and while putting things away it's been a balancing act trying to find places I can reach sharp/breakable/tearable/destructable object which means my toddler, who is well up to my chest height now, can't reach them!

It would help if he wasn't bright but [thankfully] he is and so even when I've found cupboards he can't quite reach the handle for or drawers he can't quite reach into he quickly works out that standing on one of the various steps scattered around will do the trick.

The bottom line is that he has to learn that some things are out of bounds and that is no bad thing, who wants a kid who thinks they can do what they like or have whatever they want all the time anyway?

Society's fascination with short people

2008-09-18T03:24:00.000-07:00

I read about the publicity stunt to publicise the release of the "Guiness Book of Records 2009", due out today. They brought together the 'shortest man who can walk' - He Pingping who is precisely 2ft 5.37 inches, with 'the woman with the longest legs' - Svetlana Pankratova whose legs are more than 4 ft long.

It's the usual voyeurism draw but people are constantly fascinated by short people [and very tall ones too]. But when being short is just the norm, as it is for me, it's hard to understand the fascination?

I have to say I wouldn't mind meeting He Pingping because I'd actually be meeting an adult who's shorter than me, which I've only done about twice in my life so far!

http://news.yahoo.com/story//ap/20080916/ap_on_fe_st/eu_britain_world_records

The Paralympics!

2008-09-12T06:44:00.000-07:00

There's no denying that the BBC coverage of the Paralympics is better than ever before.

Nightly programmes which have roughly the same format as the Olympic coverage, together with well known commentators and presenters [not to mention the added bonus of Tanni Grey-Thompson], makes the coverage slick and impressive.

Apart from the fact that someone couldn't be bothered to build a couple of ramps for the podiums, the only downer I find is the classification system for disabled competitors - is it just me or is it overly complicated?

This means my partner and I end up playing a "guess/spot the disability" game whilst watching.... It's a fine balance I'm sure, no one is expecting the commentator to come out with "look at that blindie", "wow he's only got half an arm" but a little bit of a clue would sometimes be quite useful, interesting. Perhaps the commentators don't want to make PC gaffs but they do get it right, it's just that for me they don't seem to say often enough what's "up" with people!

Have Kids Will Travel - article for Getting There magazine

2008-08-19T11:38:00.001-07:00

Check out my article recently published in Getting There magazine about the issue of being a disabled parent using public transport with a child in tow, no mean feat but possible with the sort of planning that would do the military proud.

http://cid-7d03cd7cc3e2777f.skydrive.live.com/self.aspx/Getting%20There%20magazine/Have%20kids%20will%20travel%20for%20Getting%20There.pdf

There's a photo of Archie taken fairly recently, with a bus and a tube, at the start of the article and one of me and him in a tube station, taken ages ago now - looks like he's got something wrong with his eye but it's actually a bad 'anti red eye' fix....

Being able to jump [or not]

2008-08-15T07:09:00.000-07:00

Ben and Archie are into trying to jump at the moment; I'm sure Ben will get the hang of it fairly soon but Archie might never get the hang of it because having Kniest and jumping don't really go together.

I was never that fussed about not being able to jump [or run] but then it was slightly different for me because I didn't have a little sibling snapping at my heels making me want to do better than them.

When I was young, the one thing I was fussed about was not being able to kneel down and sit back on my feet, if you know what I mean? It always looked like a very comfortable way of sitting on the floor but even if hell had frozen over I still wouldn't have been able to do it, my joints were never flexible enough.

However I remember, when I was about 7, a misguided physiotherapist telling me that if I did this exercise and that exercise I would be able to attain my dream sitting position. Of course this was just an outrageous scam to get me to do the exercises, which was totally unnecessary because I was slightly obsessive about doing them anyway.

Needless to say I did the exercises and I still couldn't kneel and sit back on my feet. I think I was more annoyed about being conned than upset about the exercises not working in the end!

I hope Archie can end up pleased with the things he can do rather than focus on what he can't but I guess that's always going to be slightly harder when he has a little brother who looks like Olympiad material to me - but he is my first non disabled child so it's a learning curve having such an 'able' child in contrast to one who is the mirror image of me.

Reach for the skies - if you are a disabled person

2008-08-06T10:41:00.001-07:00

Here a link to my article on new air travel legislation for ABLE magazine, which was published in the print version of the magazine as well as on their website:

http://www.ablemagazine.co.uk/index.php/component/content/article/69-airlines-explored.html

For children disability is normal

2008-07-17T01:59:00.000-07:00

I was talking to Archie the other day about going on a airplane and he was saying "and you know what mum, you'll go in the wheelchair!" That's because I always get assistance to cover the long distances at airports. He then went on to point out that we would go in the "air ambulance" which for him is the vehicle that takes you to the plane so you don't have to go up the stairs.

All this is normal for him, it's even exciting. Disability and difference is no big deal for him yet though he does talk about height quite a bit at the moment and I think he is noticing more and more that some people are taller than others.

I wonder at what point he'll find the difference 'embarrassing' or when he'll start to tune into other people's, including children's, comments about me or him being shorter than most? I do spend time worrying about all that but I suppose it's pointless worry really, instead I guess we should enjoy the oblivious honeymoon phase while it lasts.

"The Man with 20 Kids" and "Cotton Wool Kids"

2008-07-15T14:03:00.000-07:00

Just made myself depressed by watching two recorded programmes, "Cotton Wool Kids" which was on C4 and 'The Man with 20 Kids" which was on BBC 1.

With "Cotton Wool Kids" it was so sad to see the kids smothered by their parent's fears and anxieties. It was obvious watching all the children in the programme how bright they were and yet some were bearly allowed out the front door because they might just, possibly, maybe, one day, be abducted or worse. Life for them mostly consisted of watching TV and computer games. Torture.

It was torture of another kind watching "The Man with 20 Kids", there's no doubt that the guy does love his kids but it just feels so wrong that he choses to have more and more when they live in such squalor and chaos.

As numerous messageboards have commented the moment when one of the youngest members of the family was just left to find a spot on the floor to sleep because no one had thought put him to bed was simply awful.

It's quite unbelievable as to why someone would chose to broadcast their family life like this - I wonder what they hoped to get out of it? And what good did the BBC think would come out of broadcasting it?

Sometimes it's hard to tell the truth...

2008-07-09T13:58:00.001-07:00

Recently Archie [who has Kniest Syndrome which means he will never be that tall] has talked about when he is older and with that he talks about being taller...

When I mentioned this to my partner Mike he said we mustn't lie to him; indeed I haven't lied to him but I have used vague words like 'possibly/maybe/I'm not sure/I don't think so' in response to comments Archie's made like "when I'm older I'll be as tall as daddy"....

I mean is there any point in saying to him at just 3 1/2 years old, "actually Archie you're not going to be as tall as daddy, you're probably going to be more like mummy's height"? In fact when Mike did say that to him the other day he said "no, I'm going to be as tall as you daddy..."

The thing is is the whole truth helpful at this stage? Will it help him to adjust to the reality of the future? Or could it possibly have a negative effect?

If you know the answer please tell me!

Britain's Missing Top Model - Vacancy Filled?

2008-07-07T05:39:00.001-07:00

Just to say my comment about BBC Three's 'Britain's Missing Top Model" series is now on the Disability Now website:

http://www.disabilitynow.org.uk/shooting-disability

Not totally sure about the headline or byline but I didn't write them!

Britain's Missing Top Models - BBC Three - watch it!

2008-07-03T05:03:00.000-07:00

The BBC Three series 'Britain's Missing Top Model' started this week [Tuesdays 9pm] and and although it may have a few cringe-worthy moments it is actually very promising. Some may feel it is a bit voyeuristic at times but being a series about models you could say that's the nature of the beast I guess.

It will be interesting to see how the series evolves [and how it goes down with disabled and non disabled viewers] but just having a few disabled women on the TV is refreshing; when you actually see disabled people on TV you realise what a rare event it still is....

http://www.bbc.co.uk/missingmodel/

Mind your disability language!

2008-06-26T08:12:00.000-07:00

Read an article yesterday, via the 'Isn't she talking yet?' blog - great name for a blog by India Knight who has a disabled child: http://timesonline.typepad.com/india_knight/

Anyway the article mentioned the word "harelip", it just leapt out at me from the page, I didn't really think people used it any more.... [the better term here if you are wondering is "cleft lip"] and I just thought, in case anyone was remotely interested I'd put a few pointers re the right language to use when it comes to talking/writing about disability:

'The disabled', 'The blind', 'The deaf' lumps people together, much better to use: 'Disabled people', 'blind/visually impaired people', 'deaf people'

NB Some people don't mind the term 'people with Disabilities', I prefer the more political term Disabled people - which refers to the way Disabled people are disabled by society more than anything else... that's the basis of the Medical vs Social Model of Disability argument, more on that another time!

'Able bodied' makes people sound super wonderful and able, better to say 'Non disabled'

The term 'Mentally handicapped' or heaven forbid 'retard' went out with the horse and cart, use 'people with learning difficulties/disabilities'

A better term than 'Mentally ill' is 'people with mental health problems'

Don't say 'Dwarf', say 'short statured person', 'short person', 'person with restricted growth'; personally I find "little person" too American/naff and 'vertically challenged' is just laughable

'Wheelchair bound' and 'confined to a wheelchair' are just plainly ridiculous because no one is bound/confined to a wheelchair [unless they are into S&M], the vast majority of wheelchair users see their wheelchair as something that liberates them and prefer to be called a 'wheelchair user'

The BBC OUCH! worst word poll http://www.bbc.co.uk/ouch/yourspace/worstwords/ found the word 'special' is right up there amongst the worst words to use when referring to disability, use 'segregated' [when talking about schools] or 'different' [when talking about needs]

Similarly most disabled people hate to be described as courageous, heroic,
inspiring, brave, just don't use them

Finally, 'Victim of', 'suffering from' makes big assumptions, better to say 'a person with/who has…' and fill in the disability/condition.

Lordosis - curvature of the spine and all that

2008-06-25T13:14:00.000-07:00

A few weeks ago we took Archie to see my/his consultant, I was concerned that the lower part of his back is already quite curved. After waiting around, seeing the consultant's stand in, getting x-rays, seeing the consultant's stand in again we were told he would call after having spoken to absent consultant.

Weeks passed without a call so I followed it up myself. The feedback was that there is nothing they can do [certainly at this moment in time anyway] as lordosis/curvature of the spine is all part and parcel of bone dysplasia.

The only advice was to try and ensure that Archie’s spine and hips are kept as flexible as possible and keep him as stretched and as strong as possible. Though ideas as to how to do this were not forthcoming.

As a child I too went for these annual checkups with a consultant, both my parents would take the whole day off work because it was almost a whole day of waiting before you were called in. He would, with an entourage of medical students looking on, give me a quick once over and say 'no need to do anything at the moment, maybe next year, see you then.' Within minutes we'd be back out in the waiting room.

I live in the hope that maybe there's more that can be done for Archie to minimise his 'difference', but maybe it really is just pie in the sky wishful thinking on my part and more about me anyway - wishing that my back had never been allowed to have got so curved. Don't get me wrong I'm not all out to make him 'normal' but if there are ways of preventing certain things happening I'd go for that, I certainly won't be pushing for him to go in for leg lengthening that's for sure!

Disabled people overload on TV!?

2008-06-09T11:06:00.000-07:00

Nearly choked on my lion bar when a short statured teacher popped up on Eastenders last night and then on top of that there's a blind person and someone with Albinism on Big Brother!

Not sure if the EE character will be a regular but at least the Big Brother inmates might last for a few weeks and provide some sort of enlightenment. All good stuff I hope.

Disabled or not disabled that is the question?

2008-06-01T14:14:00.000-07:00

For me there is no question about it - I consider myself to be a Disabled person. The capital D is deliberate, the idea is that it makes a political point ie I feel I'm more disabled by physical aspects of society, eg stairs and high counters, and people's personal prejudice/ignorance, than I am by my 'condition' per se.

I've been having a lot of contact with disabled people recently or rather people who you would think would identify themselves as disabled but they don't. They use phrases like "normal with additional needs", or "differently able" or just deny any allegiance with disabled people whatsoever, "I'm not one of them" sort of attitude.

Up until I was about 18 I was the same. In spite of being much much shorter and less mobile/agile than my peers I had a bury my head in the sand attitude towards aligning myself with "those really disabled people over there", ugh.

Then in my gap year I got a job working for a very small disability charity working with some real disabled people and it blew me away really. Here were some people who were positive, independent, dare I say it HAPPY about being disabled. To align myself with them wasn't saying I was rubbish, unable, inferior, it was about saying I was proud to be disabled. It was about what you COULD do rather than what you couldn't and about recognising that it was the barriers in society that often had far more impact on how difficult our lives were than our "medical conditions" [otherwise known as the social model of disability...].

I think once I reached that turning point in my life I became much much happier about who I was; I wonder whether this personal contact with people who are proud to be disabled is a crucial element needed for [some] people to identify themselves as disabled, or is it just coincidence that a lot of the people who deny their 'disability' say they don't really have any contact with disabled people?

Honest to blog

2008-05-26T07:38:00.000-07:00

Someone sent me a link to a blog by a man with leukaemia the other day, it was so honest and open that it was impossible not to be moved by it: http://baldyblog.freshblogs.co.uk/

It made me think that in order for my blog to be more constructive perhaps I should be more honest and open about the issues I face especially the issue of having a child with the same disability as me.

But it's SO hard being honest with myself about the whole thing sometimes.

One of the issues I'm currently thinking about after a recent visit to the consultant is how far would I go to prevent Archie getting the same curved spine [lordosis] I have, a symptom of having Kniest. My problem is that perhaps the one thing I've always hated about having Kniest is the curved spine aspect of it - it made me semi-suicidal when I was a teenager.

But even if intervention is possible [and I currently don't know if it is because the consultant we actually went to see was "on a course", great] it will involve spinal surgery which is obviously not without great risk.

Would I be wrong to persue this option or wrong not to?

Is there a perfect non disabled/disabled sibling combination?

2008-05-06T10:52:00.000-07:00

I've been trying to work out if there is a perfect combination of siblings when one of them has a disability?

My son Archie has Kniest Syndrome which, put simply, means he will be short statured and will have mobility problems. My younger son Ben doesn't have Kniest.

Now Archie is 3 and Ben is 16 months they are already the same size. Ben is already more agile than Archie and probably physically stronger too.

Archie is starting to notice all this I'm sure and it must be hard for him to watch his younger brother being able to do certain things more easily than he can.

Would it be easier if Archie was younger? I think perhaps yes. I was the youngest of 3 sisters and I don't ever remember comparing myself in the same way as they were obviously going to be more able/better than me at most things - the excuse being they were older.

Does increasing the number of siblings distract further from the direct "competition" of having 1 disabled and 1 non-disabled child? I very much doubt I'll be able to answer that one from personal experience but I'd be interested to know from other people's experience.

Writing and more writing/parenting a disabled child

2008-04-23T06:51:00.000-07:00

Haven't posted for over a week mainly because I've been busy researching various writing commissions. The thing I love about writing is the variety, even though I've chosen to specialise writing about disability there is still a whole lifestyle to explore within that - one minute I'm writing about disabled parents or schooling for a disabled child, the next minute it's public transport, Thalidomide, Aspergers or reviewing a book!

More recently some of my commissions have meant exploring the world of parents of disabled children, there's some overlap in experience of course but it is a whole new perspective.

I also belong to this world being the parent of a disabled child and it's now that I can really start to appreciate what a tough job it is.

What I haven't worked out is - is it tougher for me being the parent of a disabled child having passed on my disability or tougher for someone having a baby who has a disability who's never ever encountered disability before then?

Looking Up book review for disability now

2008-04-14T08:21:00.000-07:00

Another of my book reviews has just gone up on the Disability Now website:

http://www.disabilitynow.org.uk/entertainment/arts/book-review/?searchterm=looking%20up

It was quite a refreshing read as the author who broke his back falling out of a tree wasn't one of these spinally injured people who then wanted to conquer Everest, trek across a desert or sail round the world, he just wanted to get some sort of life back....

Rough Guide to Accessible Britain review published on BBC OUCH!

2008-04-09T09:54:00.000-07:00

My review for the Rough Guide to Accessible Britain went up on the BBC OUCH! website today, I've done a few book reviews recently and quite enjoy them especially if I would have read the book anyway!:

http://www.bbc.co.uk/ouch/features/rough_guide_review.shtml

Disability Now article on BBC Three's series in the making - "Britain's Missing Top Model"

2008-04-02T12:40:00.000-07:00

Here's my latest article published on Disability Now website and in April's edition of the magazine:

http://www.disabilitynow.org.uk/latest-news2/media-watch-section-test/ground-breaking-or-car-crash-tv

The series hasn't even been made yet but is already causing quite a stir....

Googling yourself

2008-03-29T14:23:00.001-07:00

Every now and then I just can't help myself and I end up putting my name into google just to see what happens.

Today I found I'd been quoted in a Broadcast article about 'How Diverse is British TV?' [http://cdnnorth.org.uk/uncategorized/626] after having written an article for the Broadcast website about how hard it is to work in TV when you are a disabled person - I knew they'd like my 'trying to make an impression at belly button level' comment....

But I do have to say the Emma Bowler quote on the Marmite website http://www.freeukstuff.com/freestuff/marmite.html is not me, I would never say "Go Marmite" unless I was saying for it to go into the bin, can't stand the stuff.

Neither am I the Emma Bowler The Wildlife Artist, http://www.wildlifeartonline.co.uk/about.htm but I find it quite interesting to find out what my namesakes do.

Sometimes I wonder how I have so much time on my hands with 2 young children to look after....

When does honesty become the best policy?

2008-03-20T09:41:00.000-07:00

I had a twinge of sadness today as Archie [my 3 year old who has the same disability as me] was saying "when I’m bigger", "when I’m taller like daddy I’ll do more climbing."

I don't know how tall he will end up but the expected height range for Kniest is: 100 - 140 cm.

I know that I didn’t really clock my size difference til I was remarkably old, I’m sure I must have noticed [I’m not stupid] but perhaps I chose to block it out?

It's hard now hearing Archie’s aspirations, however small or transcient they may be. I know it's just something he was saying and he won't remember it tomorrow but it's still hard.

With me I remember there was one thing I really wanted to do when I was younger and that was to be able to kneel down and then sit back on my feet, for the simple reason that it looked really comfy and everyone else could do it.

I even told a physio about it. She said oh if you do this exercise and that one you’ll be able to do it. It was utter rubbish, as I would never have had the flexibility. Perhaps she was being nice but ultimately I felt very bitter that I couldn’t, in spite of doing the exercises, achieve this position.

At what point does honesty become the best policy?

Ben at 15 months old - starts walking

2008-03-11T15:37:00.001-07:00

OK he's not the youngest ever baby to start walking but seeing has we had to wait 2 and 1/2 years for Archie [who has the same disability as me, whereas Ben doesn't] to start walking it is pretty amazing to us.

Also the difference with Archie was that he actually started cruising when he was about 1 but just hung on to furniture for ages, then started pushing his trolley toy along and just wouldn't quite let go until he was absolutely stable. My guess was it was a protective mechanism because falling over would probably hurt him more than a non disabled child.

The weird thing with Ben is that all you have to do is get him up onto his feet, walk with him that first step, then when you let go he just keeps on walking!

I know it's probably all 'normal' for everyone with 'normal' children but it's all new for us! And it's another sign of how different our two children are because one has a disability and the other doesn't.

Broken leg update....

2008-03-09T13:31:00.000-07:00

4 weeks ago I posted about my disabled 3 year old's broken leg, happy to say he is now walking better than ever and is very very pleased with himself about the whole thing too. It is so wonderful to see.

It's hard to convey how stressful this whole episode was; it felt like he'd virtually only just started walking, then all of a sudden he couldn't and it was no mean feat for me to have to be carrying him as he's nearly a 1/3 of my weight now, then there was the anxious wait to see if it would all heal OK, followed by more waiting to see if he would get back to where he was.

Fortunately this episode has a happy ending and I really hope it is a one off. Have booked him an appointment with his consultant in May to amongst other things see if is is more likely to happen again for him than a 'normal' child or if he was just plain unlucky.

No one tells you how stressful being a parent is.

Disabled models

2008-03-08T13:41:00.000-08:00

Had another blog published on the Broadcast website yesterday:

http://www.broadcastnow.co.uk/opinion_and_blogs/2008/03/blog_beautifying_disability.html

This one was in response to the new BBC3 mission to find a disabled fashion model. It's not actually an original idea in that disabled models do already exist; some even get jobs beyond modelling unfashionable plastic rainproof capes, colostomy bags, mobility gadgets and stairlifts but they are not exactly the norm.

The one thing this series could do is generate publicity and through that raise the question of why disabled models are not used more often in the mainstream fashion arena and in advertising generally?

Two new articles published today

2008-02-27T07:56:00.000-08:00

I have two new articles up on the web today; one on rare disabilities on the BBC disability OUCH! website:

http://www.bbc.co.uk/ouch/closeup/rare_diseases.shtml

The other is on the Broadcast website and is about how disabled programme makers are struggling to tackle prejudice in television.

You might have to register to view this one, but I'm going to try and sort out a pdf file so I can link to it asap if you prefer not to register:

http://www.broadcastnow.co.uk/multimedia/opinion/2008/02/blog_disabled_disadvantage.html

3 New Articles in 'Examples of my writing'

2008-02-21T05:07:00.000-08:00

Have put just put new links to 3 articles I had previously written for Motability 'Lifestyle' magazine.

The first is on the cost of bringing up disabled children, the second on support for disabled parents and the third is on personal shoppers.

Enjoy!

Disabled child vs non disabled child

2008-02-12T12:27:00.000-08:00

Just downloading some photos of my two beautiful boys and it's very apparent now how Ben, who is 1 and non disabled, is on the cusp of being taller than Archie, who is 3 but has the same disability as me which ultimately means he will be short.

At the moment I'm sure their equality in size contributes to the way they already play together so well but I wonder how things will change when Ben starts to get bigger than Archie?

I'm sure they must currently present a strange phenomena for casual onlookers because Archie talks non-stop about absolutely anything in intricate detail and Ben is just about saying "baa" [for sheep], "roun and roun" [for Round and Round the garden] and dada [his favourite person]!

Disabled parents

2008-02-10T10:11:00.000-08:00

Good news today - a visually impaired friend has at last had a baby boy.

I tend to have my heart in my mouth for much of my disabled friends' pregnancies only because pregnancy is such a dicey game for anyone. For some of my disabled friends their disability has been an added risk. So when it all turns out OK I can breathe a big sigh of relief!

The truth is that Disabled parents are no longer the rarity they once were and it is estimated that there are over 2 million disabled parents in the UK. A lot of disabled people want children just as a lot of non disabled people do. We don't necessarily do things the same way as other parents but the end result is the same and that's all that counts isn't it!

Broken leg

2008-02-04T14:31:00.000-08:00

My oldest son Archie broke his leg before Christmas, nothing too original about that apart from the fact he's only 3 and it was broken as he stuck his leg out as he was pushed through a doorway in his pushchair. If that had had happened to a non-disabled child the leg/hip would have just have accomodated the angle but because Archie has the same disability and inflexibility as me, it broke.

Six weeks down the line the cast is off and we are now trying to encourage him to walk again. He only started walking with confidence at about 2 1/2 years old so it now it feels like he's never walked... I know it will come back again but it's so hard to watch him struggle to build up the strength and confidence again. It brings it home how difficult it is to have a disabled child moreover a child who's inherited your own disability.

Saying that it took me 34 years to break any bone and I did that skiing so maybe I deserved it!?

Pitching article ideas

2008-01-29T14:23:00.001-08:00

I've set up this blog, waded through the Writers' and Artists' Yearbook to identify potential magazines I could write for and done a big e mail out to disability organisations up and down the country asking to be put on their press release lists so I can get my finger on the disability pulse. So things are slowly but surely starting to move in the right direction.

Quite a few press offices have already got back to me with ideas that could be turned into potential articles and their enthusiasm has been encouraging.

In fact I've already sent in a couple of pitches but rather than just sit back and wait for any response to them I'm determined to keep up the momentum and continue researching for further ideas. At times it does feel like there aren't enough hours in the day to do everything right now I have to say!

Writing a children's book

2008-01-24T14:51:00.000-08:00

I'm kind of wanting to simultaneously - alongside writing more articles, looking after 2 small children and trying to have a life - write a Children's book.

Consequently I was a little bit gutted today because I snatched a few moments to do a bit of "what's hot and what's not" on the children's book front only to find a book called "Little Archie"; in fact not just a book, a whole series of books about how a boy gets shrunk to a few inches and then gets into all sorts of trouble.

OK it's not exactly the idea I had but it's probably too similar for me to get away with writing any sort of story about a little boy called Archie who gets into big trouble....

The question is whether I can make my idea sufficiently different. I have ordered one of the offending titles and will see what it has to say for itself before I deduce whether or not it's back to the drawing [or is that writing] board or not. The perils of publishing.

Eastenders hits the disability jackpot?

2008-01-23T13:57:00.000-08:00

All of a sudden it seems Eastenders has gone from ignoring the fact that 10% of the population has some sort of disability to embracing the idea head on, at least in the child population of the programme anyway.

First enter Ben, son of Phil Mitchell, who has a hearing impairment [though I thought he was surprisingly good at hearing even at a whisper when his hearing aid was broken by the evil Stella] and then Janet, Honey and Billy's daughter who has Down's Syndrome. And now - Penny Branning, daughter of Jack Branning who turns out to be a wheelchair user.

Is she set to become a key albeit another disabled child character in the series or does her brief appearance mean Eastenders can tick the "featured a wheelchair user" box for 2008 [or is that 1988 - 2008?]?

Of course if she is brought into the square I'm sure she'll be being played by a real wheelchair user.... Umm.

Disability sucks - but only sometimes!

2008-01-23T06:56:00.001-08:00

I have the most adorable, chatty, smart, cute, witty 3 year old you could wish for. He has another defining characteristic - he's disabled, with the same disability as me.

Sometimes I've found myself looking at him recently as he grows into a 'proper' boy and feeling really sad because in spite of all his wonderful positive characteristics I know there will be times when he will hate being disabled. Maybe he'll even hate me for passing it on too?

But the really galling thing about this is that I still don't think it's a bad thing to be disabled overall it's just that other people make it FEEL like it's a bad thing [forgetting rubbish access for a moment here....].

If only we could get rid of that 'it must be dreadful to be disabled' attitude then disability would never suck. But will that, could that ever happen?

Teenage Pregnancy

2008-01-22T06:00:00.001-08:00

Nearly overdosed on teen pregnancy programmes last night after watching "Baby Borrowers on Holiday" and "Born Survivors - Kizzy: Mum at 14" both on BBC Three.

Baby Borrows is the sort of programme that has you yelling at the TV "don't do it, have a life not children". OK children are a life but they are all consuming and a tie - one you don't need to have until you are well and truely ready for it. Besides half the couples on this programme don't even like each other; I really hope they just split up and go and have some fun.

Kizzy was a bit different. By her own admission getting pregnant was a mistake but with the help of her family she seemed to be getting on with it with a maturity beyond her years.

It's impossible to say whether her life would have been better if she hadn't had had a baby at 14, it certainly would have been very different but you can never truely say in what way. But what you can say is good on Kizzy for trying to give her baby the best possible start in life. Unlike the baby's so called father who fled to Essex when he found out Kizzy was pregnant...

New Year - new year resolution to write more

2008-01-17T08:29:00.000-08:00

Actually already half way through the first month of the year - where does the time go?

I think my biggest New Year's resolution is to proactively write more, seek out those commissions and gain a reputation in the disability niche I have chosen. That's not to say I won't write about anything else of course because writing is really all about the research and that has always been one of my fortes.

The first part of this plan was to get this blog up and running [perhaps that's where the last two weeks have gone!]. It will evolve but it's most of the way there now in terms of additional content.

The second part of this plan is to draw up a list of magazines/papers etc to write for, potential ideas and potential resources. I'm currently working on this. Then I can do the third part which is to start contacting the magazines/papers about whether they want ideas and if so, the ideas I have.

It's all about confidence though. At the moment it feels very much like a new blank canvas, I know it shouldn't feel that way as I've got bags of experience of writing but I guess now I'm saying, like thousands of others out there, that I want to make the move towards being a full time writer.

Let the resolution begin!

2007-09-05T13:44:00.000-07:00