ITV's 'My Dwarf Family' [their programme title not my ideal wording...]

I can't stand the word Dwarf.  Whilst some short people have reclaimed it using the word just doesn't work for me because it still has too many negative and derogative connotations.

So it was with trepidation that I watched ITV's 'My Dwarf Family' [was on Thursday 15th August, 2013] - a programme which followed 3 families each of which had one or more members who had achondroplasia, the most common form of short stature.

Although the condition is somewhat different to Kniest Syndrome the issue of short stature does throw up similiar issues whatever the label you give it and it is always interesting to see how other people fare.

I really felt for the young couple [the woman had achondroplasia and the man didn't] grappling with the issue of when to have children [she wanted them now, he didn't].  They both seemed to feel, as we did, that they would want a child whether or not it would be short statured.

Having been there and done that, and having ended up with one child who is short statured and one who isn't, I think I can honestly say that the such a seemingly simple decision can turn out to be hugely more complicated when it becomes a reality...

I also really felt for the parents of the young children who were short statured - the whole 'letting go' of your child, getting them to 'act' their age, letting them be independent just seems so much harder when they are so much smaller than their peers.

Indeed the programme opens with a boy, the height of a 4 year old, cycling by a very busy main road - it looked hideously like a bad idea, but this boy was 11.  Most likely his peers would be allowed to do this so why not him?

Whether the decision was easy or hard for his parents I don't know but there is no doubt that if you are a short statured parent [or wannabe parent] you'll face some very tough decisions along the way, it isn't a process for the fainthearted and perhaps that's why we're such a feisty, resilient lot!

If you want to see the programme it's up for a couple of weeks:

https://www.itv.com/itvplayer/my-dwarf-family/series-1/episode-1-my-dwarf-family

Government consultation on the PIP assessment 'moving around' activity - URGENT action needed

The Government is running a consultation on the PIP 'moving around' criteria - it is vital that as many organisations, professionals and disabled people themselves respond to halt their proposed change:

 

In a nutshell to be eligible for the enhanced rate of PIP [Personal Independence Payment] you mustn't be able to walk more than 20 m, yes a mere 20m.  Previously the proposed distance was a more realistic and better justified 50 m. 

 

The deadline for responding to this consultation is 5 August 2013 so please do hurry and respond, use the We Are Spartacus webpage here to help formulate your response:

 

http://wearespartacus.org.uk/pip-mobility-consultation-making-most-of-opportunity/

 

My response was as followed:

 

Dear Sir/Madam

I feel very strongly that the 50 m PIP moving around criteria should not be reduced to 20 m.

It represents a totally unjustified moving of the disability goal posts so that people who, like myself, have had their mobility difficulties recognised and acknowledged through receipt of Higher Rate of DLA may all of a sudden no longer be eligible for the enhanced rate of PIP. There has been no miracle cure here just a cynical shifting of goal posts.

To limit receipt of the enhanced rate of PIP to those who can effectively only move about between rooms in their house and no further is simply ridiculous and the Government has failed to provide any research justification for the 20m criteria.

Reducing the formerly well established 50 m limit even goes against your own second draft of PIP assessment criteria, Nov 2011 where you state '50 metres is considered to be the distance that an individual is required to be able to walk in order to achieve a basic level of independence'. Where is the justification that now only people who are unable to walk more than 20m should be eligible for enhanced rate mobility component?

Indeed for years the 50 m benchmark has guided access to the built environment and widely used in relation to disability benefits.

Using a 20 m benchmark is unrealistic - it simply does not provide any practical level of mobility. There will be many disabled people with considerable mobility difficulties who may be able to walk 20 m but not over 50, who will lose access to the Motability Scheme which will potentially have a huge impact on their independence , for some it will jeopardise or even mean termination of their employment options/status, with repercussions on other parts of the benefit system.

It's hard to believe that reducing the limit from 50 to 20 m isn't an infringment of the Human Rights Act.

Maintaining the 50 m limit acknowledges that those with mobility difficulties have a right to a certain quality of life, free from isolation, with the option of persisting with practical opportunities eg doing the school run, GP/hospital appointments, shopping, as well as social and employment opportunities secured through having a relatively small amount of help through the enhanced rate of PIP.

Please do not take away the independence of hundreds of thousands of disabled people who have considerable mobility difficulties, the help they need is relatively small but the impact of not having this help would be hugely negative, let alone unjustified.

Yours faithfully

Emma Bowler

Don't Call Me Crazy, BBC Three - part of It's A Mad World

I'm not interested in TV programmes about celebrities, so they are getting married, having babies, spending money, flaunting themselves, so what.

What I like programmes about REAL people and you couldn't get more real and more raw than the young women on 'Don't Call Me Crazy' on BBC Three last night which launched the channel's 'It's A Mad World' series of programmes looking at mental health issues affecting young people in Britain today.

The programme told the story of a few of the young women in Manchester's McGuinness Unit, where clearly dedicated staff worked hard to try and support them on the path of getting back into the world again.

But their job is not easy because in spite of the fact that the women featured were articulate, insightful and beautiful, and sometimes comic and fun loving too, they are plagued by demons of depression, self harm, suicidal thoughts/attempts and eating disorders.

I couldn't help wondering what has to happen to make a child grow into a young person with such huge issues to contend with but young people today do have so much pressure and so much to contend with, in an increasingly difficult world to live in because of financial, housing and employment worries.

The honesty and courage those young women had to share their experiences with viewers was astonding and I hope that at the very least they've gained something positive, for themselves, from being part of the programme. 

Disability Now article - The Growing Pains of a Disabled Parent

No one warns you how hard it is to be a parent, let alone the parent of a disabled child. 

I was talking to another parent of a disabled child the other day and I basically admitted I 'wing' it - I try things out, see if they work and if they don't move on to plan B, C, D... til I find the solution. 

Sure, there's some input from the 'professionals' from time to time but the bottom line is that the 'winging' it that us parents do is the only real way forward.  He totally agreed, saying he did the same, which was somewhat reassuring!

My latest Disability Now article about the trials and tribulations of being a disabled parent of a disabled child is now up on their website:

http://disabilitynow.org.uk/article/growing-pains-disabled-parent

My latest articles: Wheelchair dancing and an interview with ex serviceman Rory Mackenzie

I've got two articles in the latest edition of the Motability magazine 'Lifestyle'.

The first is about wheelchair dancing [see page 35] and increasingly popular pastime and sport for wheelchair users, and the second is an interview with a great guy called Rory Mackenzie [see page 46] who was injured in Iraq but has gone on to do so many exciting things:

http://digital.edition-on.net/links/6716_lifestyle_79.asp