A Life Worth Living

I’m full of conflicting emotions this week, due to a range of things really, but one of the main things taking up space in my head is April being World Autism Month. And linked to that, we have Autism Awareness Week this week (mainly in the UK), as well as World Autism Day 2 April. I guess nobody could agree on whether a day, week or month would be most ideal, huh? Either way, more widespread knowledge and understanding of autism-related matters is an all year round kind of thing really, just like with other ‘awareness days’.

Sadly, there is a lot of conflict within the so-called ‘autism community’ about what we should be talking about during this period of autism in the limelight, and about what words we can use, who should be listened to (and who shouldn’t) etc. Hence my unsettled heart and mind…

And naturally, I find myself thinking about what I should (or shouldn’t) post, for this month, for today… and for all other days too. Who am I doing this for? Why am I posting about life with Penguin? Is it mostly for my own sake, or for his, or for other parents who share a similar ‘journey’, or…?? I think the answer has to be that it’s for all of those, but also (maybe most importantly?) for the sake of everyone growing up with autism & learning disability, and for the world to understand that these children’s (and subsequently adults’) lives are every bit as valuable as everybody else’s.

It should be obvious really, that of course their lives matter just as much as everybody else’s. Yet, on a frighteningly regular basis, I keep seeing examples of how they are treated as less worthy humans, as if their lives are more or less disposable. Locked up in totally unsuitable ‘treatment units’, kept away from their families, mistreated and abused. Or not getting the medical help they should due to lack of understanding and/or care. Orders to not resuscitate, as their quality of life isn’t deemed worth it. Lives ruined, traumas caused, and avoidable deaths.

If you follow us on instagram, you might have seen a couple of examples in my stories this week… About Emmanuel (on instagram as @myautismjourneyinsweden) who is currently locked up in ‘care’ in Sweden. And about Kreed (of Kreed’s World) who died almost 5 years ago aged just 18, and whose mum is still battling with the trauma of his death, and whether it could have been avoided if there had been more understanding, more listening. There are many – way TOO many – life stories like these here in the UK too. It’s a worldwide issue of a lack of caring and compassion, and of human rights.

While Kreed was still alive, his family was showing us about living life with ‘no limits’. He had the most amazing adventures and a very rich life, and when he lost it, it left a black spot in my heart that won’t go away. But it also left me with more knowledge, passion and conviction about what is possible.

So while I’m posting on our social media pages (and sometimes here on the blog) about walks in pretty places, sunsets over the sea etc, it’s not just for my own pleasure. I want people to see, and to fully understand it in heart and mind, that being disabled in the ways that our Penguin is, doesn’t mean not having a life worth living, and a life worth saving.

As always, thank you for reading x

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10 thoughts on “A Life Worth Living

  1. This is a well written post and I think both with an appropriate tone and useful viewpoint. I feel very similar about what to share too, which has caused me to stumble and avoid it altogether so far. Thank you for highlighting two cases I didn’t know about and sharing information for others. Ps love the photo in the centre too x

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  2. This is beautifully put Malin x I haven’t done anything about Awareness this week, for the first time ever, and I too feel that there is such conflict surrounding it. Luckily, only having about three and a half followers, I haven’t had to deal with any arguments or accusations – good thing as I genuinely have run out of steam. I think all we can do is show our lives as they are and hope that people take or leave it. I absolutely love seeing your photos – they are calming and a wonderful escape. It has been almost impossible to get my kids outside at all during these endless lockdowns but once our ‘adventures’ can be prised back into their routines, there will be no stopping us. Sending you loads of love x

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    1. Thank you so much Martha! Yes, that’s exactly how I think about it most of the time, that I’ll share about our experiences, and hopefully – along with others sharing their perspectives & experiences – it will contribute to an all over better understanding, and hopefully be of some kind of help/hope/inspiration…
      I’m so happy to hear my photos bring good feelings too, I’ve always had a great love of photography and get a lot out of taking pictures, as well as looking at them. Penguin likes to look at photos too.
      Hopefully it won’t be too long now until this pandemic is over, although it still feels almost endless, and I really hope you’ll be able to have lots of great experiences once you get back ‘out there’ again! Until then, I’m hoping that life indoors has its fair share of meaningful moments too ❤ xx

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    1. There’s such a cacophony of voices and opinions… I mean, it’s a good thing that there are a broad range of voices, and a diversity of experiences represented, but there is a lot of squabbling… So many voices, but I’m not sure if anyone is really getting heard?
      Personally, I’ve felt more okay about it this year, so far, than I did last year and the year before. I like to think that it’s because I’m more comfortable with my own thoughts and feelings about everything, a bit more confident maybe? Though perhaps it’s just that I’m too tired to get as worked up about it this year, lol. Take care x

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      1. I think I am probably also too tired to get worked up about it. I find it really sad the amount of squabbling going on and as you say feels like no one is really being heard.

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  3. Very well put. You can never do too much to spread awareness on such important subjects and you should have no doubts what you are doing is amazing in both helping those with autism and educating those without.
    If using this blog as a medium also helps you do celebrate some happy times with readers and share your joy, then that’s even better!
    #KCACOLS

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