Invisibility

Following on from discussing my favourite subject of food, I am now going to tread carefully around my second favourite topic at present. Politics. My close friends will know how incredibly disappointed I feel about us leaving the EU, in fact that Friday morning the referendum result was announce, I declared we would be upping sticks and moving back into the EU. I honestly have no comprehension of how people can see us being more successful as an individual unit, surely we are better off with a bit of backing, some friends to bounce ideas off.

It has not been until this week that I thought about the true enormity of how our “Brexit” (I hate that word) campaign is going to affect people like Jude. He needs life to be laid out as easily as possible, no additional worries or access barriers to the rest of our world. I read the following article and it truly made me feel very sad indeed. Please read its entirety.

https://www.theguardian.com/commentisfree/2016/may/26/leaving-eu-autistic-son-brexit-britain-european-union

So this lovely young man – his support system (and friends) he comprehensively relies on may now want to move out of our country and he will not understand why. What will he think? That they do not want to be with him any more? That he has done something wrong? What does this mean for Jude in the long run? I mean, it is without doubt that he will need 24/7 support as an adult but what if there are not enough carers in our country to cover everyone that needs their help?

But people generally do not think about populations such as those of our disabled individuals and families, all that has been discussed is immigration and “taking back control” of our borders (I wonder how many times Boris said those words over the last couple of months…a million at least?)

Are disabled people invisible within society? I have read a lot recently of people saying this is sadly the case. Did anyone hear any discussion within the EU referendum debates of how it would be better or worse for disabled people if we stayed in or left? I certainly did not. Surely it is these sorts of people who we should be standing up and speaking for, especially when so many of them are not entitled to a vote and cannot express themselves verbally. Some (like the guy in the above article) do not have a clue what it is all about and I know for certain Jude would be the same. Have we become an entirely selfish nation?

Unheard voices in EU referendum debate

This article below is written by a man who went blind overnight as a teen and now campaigns for equal rights for disabled people; he argues that things are possibly even getting worse for disabled people in society.

http://www.independent.co.uk/news/uk/home-news/disabled-people-risk-becoming-more-invisible-in-uk-says-paralympian-a6759436.html

I’m not sure I agree with this…though in reality, what do I know?! I’m not disabled. But I do agree it is not getting any better. If I look at something as simple as summer camps for Jude, all he is able to access are those specifically initiated for disabled children such as through SNAP, a branch of Mencap. He is going to attend 4 of these days across the holidays 10am-3pm. But what else?! Technically, I could enrol him in all manner of fabulous holiday camp days for children but in truth, he cannot go as a) staff are never trained in looking after ALL types of children and b) no provision will be made for children unable to participate fully in whatever the activity may be. Jude would be attending to socialise and perhaps learn a new skill but if he won’t play the game “properly” then he will be made to feel unwanted. This is a massive assumption on my part and I know it would not be the case in 100% of situations however, we have been there and done it before and I’m just not willing to put Jude in that potentially embarrassing or humiliating circumstance ever again. If anyone has an example that says otherwise then I would LOVE to hear from you.

ElsandJude2015

So until then, during the summer holidays Jude will mostly remain at home or with me out and about or at Jubilee House with Jade in a setting he feels safe and where he can be himself. Largely invisible to the social world. This may be considered as my fault and a while ago I said that one of my goals with Jude is to bring him into society a bit more however, I have to think about his feelings and perhaps it’s best to move gradually. He will be very happy wherever we go but my point is that activities for him are very limited and he is not able to easily express the 10 year old boy within.

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