19 Nov

Let’s talk about…Autism

the infinity sign in rainbow coloursSo, I might have been a bit quiet this year, but I’ve had a LOT to get my head around. Back in January I started to do a course named Understanding Autism by Future Learn.  I thought that I’d do the course because some friends of my son are Autistic and I thought that if I knew more about it, than I could explain what that meant, to him.  Coincidentally, at the same time I came across some YouTube videos about autism in women.

And the penny dropped. The reason behind my crazy messed up life. The reason for my clumsiness of body and speech.  The too-many-to-mention mix ups and misunderstandings.  The way that I can write fluently yet struggle in face to face communication.  Why I can’t stand wool on my skin or scratchy labels in my clothes.  Why my parents had my hearing tested as a child because they didn’t think I could hear them.  The way I like things neat and clean, and why my ears hurt if it’s too loud.  How I can hear electricity and nobody else can.  How I literally cannot hear someone talking to me if there is more than one noise of a similar volume going on at the same time.  Why I’ve felt like I can fit in everywhere and yet nowhere at the same time.  Why I seem to experience time very differently to everyone else.  Why I’m different, “other worldly”, “too good for this world”, and even “aggressive” or “patronising” or other such hurtful descriptions for my poor overloaded little soul.

How I’ve been gaslit into thinking that none of the above mattered that my experiences were somehow all in my head and I was making them up.  How all the bad things that have happened to me are my fault, because I was a broken, a wrong, a faulty individual.  That I deserved it, brought it all on myself, that I am flawed, and nobody else is that accident prone/stupid/careless/naive/other insult.

How I’ve cried and accepted that I was just faulty, damaged, wrong, a square peg in a round hole, a black sheep, defective and somehow deficient because I am unable to cope with things that other people seem to do really easily.

But I’m not. I’m normal. A perfectly normal autistic person and there are thousands and thousands of people out there who are just like me.  It was an emotional cannonball.  From my initial joy that there are so many people out there who have had such similar experiences of life as me, the confusion and depression hit me as I looked over a whole lifetime of experiences and re-examined them under the lens of autism.  I don’t want to go into it all here but I’ve had an unusual life that has been unusually traumatic.  The victim-blaming I experienced became even more upsetting now the light of autism has been shone on those dark places.

I’d accepted over the years that I was different from everyone around me, and now I find I am not so unique after all. At first this felt like a betrayal, but is increasingly feeling like a comfort.  But the comfort of a community also brings with it the outrage and despair that people like me have been mistreated, institutionalised, misunderstood, misdiagnosed and even killed because we are different.  The marginalisation and abuse of autistic people is a heavy burden to share, and it is still very much happening today.

So just as I found I am no longer alone, at the same time, it’s now set in stone that I will never, ever be “normal”.  I’ll never be able to enjoy normal social occasions like weddings and barbecues.  I’ll always stick out like an awkward sore thumb and I’ll never just blend in and be one of the crowd.  Some things in life will just always be hard and upsetting for me and no amount of mindfulness will fix that. And I know, you should be proud to be yourself, and I know I’ve never even wanted to be a Karen but I guess part of me wanted the normal two kids, a husband and financial security. I know that I have talents and skills that your average person doesn’t.  But it’s tough.

Online, the #ActuallyAutistic community is strong, and warm, and supportive and I’ve learned so much from my fellow autistics. But then I hop back into real life and realise how little people are aware of autism in my day to day life and how nobody understands or appreciates our struggles.  And why should they?  Before January, my main image of Autism was a little non verbal white boy, rocking back and forth and maybe screaming and biting people.  That it was some kind of brain disorder and that the explanation was the “extreme male brain” theory.

I have only just begun this journey, but I’ve learned that just because we are disabled, it doesn’t mean we are incapable.  That autism isn’t a brain defect but a difference in neurological circuitry.  I’ve learned that we experience the world with less filters than the neurotypical brain, and therefore our daily experiences are significantly more vivid in many many ways, some of which can be utterly exhausting and overwhelming.  I’ve discovered that simple things like headphones can make such a big difference to how tired I get in a day, and that not stimming causes me anxiety.  I have to move, always, and this is OK.  It’s beautiful to discover things that are helping me, but I have moments of regret, knowing that every area of my past from school results to avoiding abusive situations might have had different outcomes if I had just known I was different.

It’s been a rollercoaster, a bittersweet journey and I’ve barely scratched the surface here of my autistic internal voyage so far.  It’s hard to believe that this time last year I didn’t know that I was autistic – or that the professionals that I’ve encountered over the years didn’t spot it either.  I’ve still got a way to go till I achieve Autistic Nirvana and lose my well crafted but rapidly cracking mask completely but, I’m hoping, that getting it here in black and white, will help, a little.

In the meantime, I have so many ideas for t-shirts.  Here’s what I’ve made so far: https://www.wildbunnyarts.uk/product-category/t-shirts/autistic-pride/

28 Oct

Christmas is a time for giving….

 

But if you think this post is going to be all sell, sell, sell, you’re wrong.

You know where I am, you know what I do and I am ready to talk when you are.

Until then, let me tell you about a charity that has touched my heart.  I heard the founder of Bloody Good Period talk on Reni Eddo-Lodge’s amazing podcast “About Race” (a bloody good listen, and I strongly recommend her book as well (affiliate link to book).

The podcast episode featuring Bloody Good Period really struck a chord with me.  As someone who has had to rely on charity before, I loved that Bloody Good found it important to listen to what people actually wanted and needed rather than just handing out products that were cheap, uncomfortable or just not practical to use for many displaced women.

I’ve now bought a reusable cup which is great for me, but many women have neither the confidence nor the privacy to use these products.  I have lived with shared mixed gender bathrooms and communal eating and cooking facilities and this is not the kind of environment that reusables are suitable for.

Bloody Good Period ask women what they want and provide it.  This alone is revolutionary for providers of support services for vulnerable women. It made me feel very happy that there are good people out there who will listen and not judge.

So, this Christmas, for every sale, I hereby pledge to buy something from the Bloody Good Period’s Amazon wishlist.

Even if you don’t fancy buying anything I sell, you can get involved and make a difference by buying a one-off gift for people who can’t afford period supplies or even subscribing and donating something on a regular basis. Check their how to donate page.

So instead of buying cards that use trees and end up in the recycling bin two weeks later, why not use that cash to help ladies be a bit more comfortable this festive season?

Please?

 

22 Jan

#shoutoutrevolution – Phantom Art Drop

Phantom Art Drop is a beautiful project akin to the Random Acts of Kindness movement.  Rather than dropping notes and acts of kindness, Phantom goes a whole leap further and drops her/his beautiful artwork in a public place with an accompanying handwritten note attached.

The project tickles my soul, and as soon as it stops raining so damned much I am going to join in.  Part of my fear of involvement is a fear that someone will trash my hard work, either binning it or otherwise vandalising it.  It takes a brave soul and a leap of faith to transcend this.

The Phantom Artist’s concept is beautiful, spiritual and heart blossoming.

So, I asked a few questions:

Who are you?  I’m a hopeless idealist. An anonymous artist who believes that through art we can learn to care for each other more. Strengthen the bonds of community and recognize the need for kindness without the want of fanfare.

Where can I find you?  I’m found in the Caribbean. I live a life of sand, sea and sun. In a way it influences my art. The people and the island life, it’s all apart of me and who I am.

On the web:

https://www.instagram.com/phantomartdrop/

https://www.facebook.com/fantomuartdrop/

What made you come up with your unique idea?  I can’t attest to the novelty of the idea but the reason behind it stems from the need to truly make a connection with someone. To reach out and provide both solace and inspiration.

How I’ve chosen to do it simply happened as a result of my skill set. Honestly the ‘what’ and ‘how’ could have been anything so long as the ‘why’ was satisfied.

So the art and the handwritten letters were my means of doing that. And that’s really the point. For each to take what they have as a gift or talent and give that freely to another in an effort to touch their life positively.

How can I join in?  I encourage any and everyone to take up this cause for kindness. I think we live in a time where it’s desperately needed. Love has become so conditional. Favor and kindness are typically only served if reciprocated with attention and adulation.

This is why I remain anonymous. It’s not about who does it but rather; simply; that it’s done for its sake and nothing more. So to join, do a kind thing for someone for no other reason than to see them smile. Using whatever God has given you. The Phantom Art Drop project is a notion of selflessness and giving… One that I hope we all can embody in our own way.

Note- creatives try leaving a random gift out in the open for anyone to receive. I promise it’ll give you a fresh perspective on life. ?

Can you recommend and amazing art book?  Oh wow hmmm, I quite like ‘ The Story of ArtThe story of art‘ by E. H Gombrich*. It outlines how art developed alongside the people it was made for and how it helps shape and transforms civilizations. It forces one to consider just how influential and important art is or can be.

I love the style of the Phantom Artist, what do you think?

*Amazon associates link

03 Dec

Working tax credits – challenging the “commercial” test.

In early January, HMRC had requested a set of very specific information from me – accounts, receipts, that kind of thing and I had sent them exactly what they asked for.  At the end of January, I went to check my bank balance one day, expecting to see my working tax credits and…nothing.  No working tax, and no child tax credits. I rang the office, expecting for there to have been an error of some kind, only to be told that I had failed their tests and that they would be taking my child tax credits – the money meant for my son – to repay the alleged debt that I owed them.

Devastated, I asked for further information but they could only tell me that the decision-maker’s word was final.  No advice, no word of where I had gone wrong, nothing.

Back in 2015, the rules changed for self-employed people claiming working tax credits and anyone that didn’t meet the new criteria would no longer be eligible.  I thought nothing of it, after all I worked regular hours, was profitable, and my business had a future.  Someone, somewhere, had decided otherwise, and nobody could tell me why.

Ten months later, I have won my appeal against their decision in a tribunal.  It has been tough, stressful, I have used food banks and borrowed money for bills, my son has gone without clubs and classes but we have won, just in time for Christmas.

I could not have done it without some key information, which is what I am going to share with you now, for if this abrupt removal of your lifeline happens to you.  It is cruel and inhumane what they are doing to us self employed people and if you are a) in a creative business and b) universal credit is coming to your area, you are at risk.

To avoid all of this, to exempt yourself from the profitability and commerciality test: 

  • Register as a limited company.  As  company director you will be an employee not a self employed person so the new punitive rules no longer apply.  Be aware though: as a company director, your name and address will be available to the public.  This is a risky move for some people.  Do your research. Be safe.

Prior to your tax credits being stopped:

  • If they ask you for a set of information, receipts etc., know that you are being assessed.
  • Send what they ask for, plus: a business plan for the financial year in question, future financial forecasts for the year in question, flyers, business cards and a comprehensive explanation of your business.  They need to be reassured that you have four weeks’ work in the future to do.
  • Send photocopies only, because I hear they lose a LOT of information that is sent to them.
  • Send it all by special delivery, so that they cannot deny receiving it.  This will all cost quite a bit of money, but trust me, it is worth it.  Losing your documents is a common occurrence.

I can’t guarantee this will, help, but that is the kind of thing they look for.

If you wake up one morning and have no cash, if they have stopped your money:

  • Ring and ask for a “mandatory reconsideration”.  You need to send them anything that you think might add to your case.  Tell them you can’t feed your kids and they need to start paying you your child tax credits back.
  • Citizens Advice can help at this stage.
  • IMPORTANT (because this takes a long time to come) put in a Freedom of Information Request asap. This is VITAL, they will not tell you the exact reason that your claim has been terminated, you will have to scour the information here and find out for yourself.  Within it is a score sheet. This will tell you more.  You won’t get this in time for your Mandatory Reconsideration, but you will do in time for your appeal.

If they turn down your Mandatory Reconsideration:

  • Citizen’s advice cannot help you here, they are not qualified enough.  If you are lucky and live in the right place, see if you can find a Law Centre.  If like me you don’t have the right postcode to get “free” help, you have two options: pay for a solicitor, or, do it yourself.  As I had no cash for a solicitor, I took the latter.
  • Begin your appeal straight away.  Revenue Benefits has loads of information about how to do this.
  • TIME IS OF THE ESSENCE. You have a tiny window of time to appeal in and chances are any letters they send you will be dated several weeks before you receive them, so you have to work fast.  Don’t worry, you will have plenty of time to prepare your case – between three months to a year before your case is heard in the Tribunal court.
  • Use this time to go through your FOI with a fine tooth comb to find out how they have marked you down on their score sheet and find evidence to disprove their (what are likely to be) assumptions.
  • Back this up with evidence that you’ve been working hard in the meantime.
  • Keep a time-sheet, make sure your accounts are kept up to date etc, because when they call you to court, you’ll have maybe two weeks notice.
  • Make a formal complaint.  For me, this confirmed what I had discovered via the FOI, that they had marked me down for information that they hadn’t actually asked for! if you’d like an email address, ask me.
  • Check case law.
  • Try to find someone to go with you.  This availability varies drastically area to area, so you’ll have to do your own research here.
  • Don’t give up.