Email #13

Dear Harriet

When I lived in the next village, and before my parents moved away from it, I lived two roads from my parents.  There was actually a connecting path, as my eldest knew all too well because when he was younger, if he didnt like what I told him, he would actually go out the front door and run full on sprint down to his grandparents just to complain about me.  One of my main driving factors for getting fit was so that I could keep up the pursuit on these occasions! In the end we worked out it was far simpler to ring my parents, and they would be waiting at the garden gate when my son arrived.

Living so close to my parents had other benefits (no just for my son to have somewhere to go when he was melting down) but when my mum applied for a motability car she needed me to be her nominated driver, and living so close meant this was possible as it fit the criteria for living within a certain mile radius.  This is one of the ways motabilty is able to ensure the cars are being used for the disabled person and not misused by a nominated driver.

So of course when my parents were forced to move to a nearby town because of the bedroom tax, and I was moved to the village where I am now because of the harassment, the distance between my parents and I increased.  Not only could my son no longer run down to his grandparents during a meltdown, I was now outside of the allowed mileage for motability's rules and so my mum lost her car and her means of transportation.

There were other implications too.  My son has always had issues with bathing.  He will swim no problems because a swimming pool is open.  But try and get him into a bath and he will fight you. And I mean an actual physical fight where you will be punched and kicked and he will run away from you.  Its easy to be able to overcome a toddler who doesnt like baths, but when you are trying to get a 5ft 5 teenager into a bath when you are only 5ft 4 yourself, its not going to happen.  Especially when the whole reason for the fight is because its instinctual.  Most people are familiar with the "fight or flight" response that comes from the oldest (in terms of evolution) part of the brain.  If you fear that your life is in danger you will respond from this part of the brain with either a fight or a flight response.  And he responds with fight.  Because he genuinely believes his life is in danger.  His fear is real: he believes he is going to drown.

The only option for him to clean himself then is for him to have a shower.  Where we lived before this wasnt an issue because we had a mixer bar shower.  Now we only have a bath and a shower isnt a legal necessity so our landlord will not install one.

I have tried to explain this to the occupational therapist who came out to assess my son for a grant to adapt the house, because he is disabled and we should be able to apply for the grant.  However they and the people at the Young Persons Planning Forum do not accept that his behaviour is borne of fear.  They believe it is simply him refusing to bathe as a behavioural issue and all I need to do is encourage through positive re-enforcement.  Their failure to understand that his anxiety is real and psychological not behavioural is currently the biggest hurdle I face, the biggest source of my own anxiety and my most challenging logistical issue.

Because my only option is to take him to my parents so he can have a shower there.  And they no longer live two streets away, they live 6 miles away.  That might not seem a lot, but most people if they need a shower can go up to their bathroom, not travel a 12 mile round trip for the sake of basic hygiene.  This seems appalling in a first world country.  Basic cleanliness is a human right that many take for granted because they dont have to have this battle which bottom line comes down to an issue of finance and funding.

If I could afford the £200 for a mixer bar shower from screwfix I would order one.  If I could afford then the builder and plumber fees to install it I would book them in.  Hell, if I could afford for a "man about the house" type tradesman who would do it cheap but not necessarily to the standard that my landlord required I would even do that.  But the bottom line is I cannot afford to do this and thats why the grant system is there,  Except my son fails the criteria because he is physically able to get into a bath without anyone caring about the psychological problems that prevent him from doing this if I fill it with water.

I am sure I am not the only person who faces such challenges of meeting criteria for grants or financial support to meet basic needs.  Ultimately when government departments such as occupational therapy which come under social services have their funding cut back to the bone, the repercussions are that they tighten the criteria so much that people are unable to get the facilities or services or support they require because the money isnt there.

And thats whats happened with the Independent Living Fund.  Set up ironically so that disabled people would be able to live "independently" but with support to do so, the funding has been cut so that those people are now unable to live "independently".  This is not right,

This is exactly the sort of issue that Labour need to be addressing on behalf of its members and constituents and the public in general,

Labour seems to be shocked and surprised by the "straw poll" results of "grassroots" members who are coming out in support of Jeremy Corbyn.  But this is why: because we NEED socialism.  We need a voice of support, we need someone who is willing to stand by us and who is willing to address these challenging issues.  Not a voice that is going to agree with the cuts and "reforms" that are causing the funding crisis that each of these services faces.

Labour needs to listen to this, and needs to listen to us.

Constituent, Labour Party member, Union member, sleep deprived carer, concerned citizen, self employed mother, mother of a teenager with ASD, socialist, environmentalist, Disabled Rights supporter, Jeremy Corbyn supporter, mother feeding her children with nectar points, defender of the vulnerable, advocate, logistics savant.