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.
Sunday, November 20, 2011
Tuesday, June 21, 2011
Disability hate crime
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
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
Thursday, May 19, 2011
The Disability Balance... guilt, cold swimming pools and school PE
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?
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?
Tuesday, April 12, 2011
NEW! Rough Guide to Accessible Britain - Family Days Out
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.
Thursday, March 10, 2011
Disability and the 2011 Census
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.
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.
Tuesday, February 8, 2011
Children's book about disability...
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!
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!
Tuesday, January 18, 2011
Being a parent
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?
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?
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