An Open Letter To The Scottish Government.

As most of you know, this blog usually runs the gamut from funny to silly to sad to angry and back again with everything inbetween.

It's been cathartic, it's been entertaining and at times it's been - hopefully - helpful.

But now I feel is the time to be brutally honest.

 

So here we are almost a year into the ongoing lockdown situation due to Covid and I have to admit that I'm done.

Far from the "We're all in it together!" narrative that's been banded around since last March I've come to realise that in the day to day running of things and as far as special needs families are concerned nothing has changed.

Oh there are nods by governments and local authorities towards the issues we're having to deal with but at the end of the day it's all just empty platitudes and buzzwords.

Yes, we all know that this has always been the way but to be honest right now it actually matters.

And the lack of action and support is having effects that will be felt for years to come. 

I can only speak for myself and my family but am pretty bloody sure there are others in the same situation or worse.

And at this point all I can hope for is that something will change.

But we know deep down it wont.

And why?

Well it's pretty obvious by this point that we're not important.

We're not people.

We're just collateral damage.

As a family of 5 - 4 of which are Autistic - we've done our best during lockdown, we've social distanced, we've stayed in unless necessary and we've obeyed the rules.

We've also watched folk bulk buying food and toiletries, leaving our kids unable to eat and stood as folk take out their frustrations on them outside shops that are kind enough to let us in without queuing and seen comments regarding those who can't wear masks shouldn't be allowed out.

We'd love to be able to only go out once a week and bulk buy but thanks to a mix of Covid restrictions and something called a "Tax Block" (no, me neither) we've been waiting nearly 3 months for our new mobility car after trading in our old car in December.

Our twin daughters have done their best to adjust, tho' one has found it more difficult than the other - sobbing daily because she misses her friends, her school trips, her yearly Beatles pilgrimage to Liverpool and constantly tells us how she's scared she'll never see her friends again.

But she's not classed as 'vulnerable' so there is no support.

Her sister has coped fine till this week when the severity of the whole situation hit her resulting in broken doors and (our) broken hearts.

But again, not being classed as 'profoundly' disabled or vulnerable her mental health means nothing.

Our youngest, who cannot social distance, hasn't been out - save school, the garden and one (late) birthday shopping trip - for almost 12 months.

The places he loves are shut and he can't understand why, watching him 'visit' the Science Centre and Transport Museum via Google Maps and grabbing his school uniform everyday as he shouts "taxi!" can sometimes be too much to bear.

But again, he doesn't count.

Not just for help and support but in the vaccine rollout too.

I've just discovered that I'm getting vaccinated next month because I'm classed as a carer due to DLA getting paid in my name.

But my wife?

No, she has to wait.

And our children?

Who knows?

Because as I've mentioned - they're not important.

It chills us to know that if either of us caught Covid we don't have the space or resources to self-isolated, we wouldn't be able to shop, or eat or survive but still it doesn't matter.

As an Autistic adult the year long change in my routines has had a profound effect on how I function - I work from home and have time and space to not only do this but to take time out to refresh and recharge, this has gone, the new routines are not my own and can be difficult to achieve.

But I try for my family and have been trying for nearly 12 months.

But on top of lockdown life goes on, and the soul-destroying bureaucracy that we've fought for almost 17 years to give our children a better life continues relentlessly.

We claim housing benefit, every year we have to submit bank statements and the like and every year without fail, the statements go awry and we have to re-apply.

Between this, PIP/DLA applications and everything else that goes with being a special needs family it's time consuming and upsetting but we know it needs to be done.

But this year it's different, local authority offices can now use Covid as an excuse for this uncaring incompetence.

How?

There are so many examples but I'm going to give just one.

We re-applied in December but the computer system (isn't it always the way?) wouldn't accept the bank statement attachments (the ones that you actually need to send), so we sent them all separately.

But surprise they weren't kept or looked at.

Our claim was denied.

With no name or number to contact we now have to go thru the whole process again and all while now sorting our council tax and rent.

Because bank statements that show you receive DLA  and information that shows you're attempting to continue a real life whilst home-schooling and supporting three disabled children just isn't a good enough reason to not offer support but actually think.

To show empathy.

But why should you?

We don't matter.

But we are strong and we continue to fight.

Until this week.

I woke up Wednesday and realised, I have no fight left - I can function for my kids, my wife and for the work I'm doing but for me?

I'm done.

Congratulations you've beaten me.

You've won.

Well it's what you wanted wasn't it?

Or did you not think?

So if you do care, if you want Scotland to be a fair and equal society do something to help.

Or is it just too much effort?

The most terrifying thing is that this is just the tip of the iceberg, there's so much more that I've left unsaid.

But I'm pretty sure we're not the only family left behind.