Sensational Learning with Penguin

[If you’d prefer listening to a recording of me reading this post, rather than reading it yourself, please scroll down to the end of the post to find two audio files (as I got interrupted, and haven’t yet worked out how to fuse the two files together, sorry).]

I regularly come across discussions on social media about what words that should or shouldn’t be used when talking about autism. Sometimes these discussions are friendly and helpful, while at other times… well, not so much.

Personally I don’t really mind what exact terminology someone is using, as long as I can see that their heart is in the right place and their intentions are good. But as I myself use words or terms that often come up in these discussions, I end up spending a considerable (and perhaps unreasonable) amount of time pondering whether I should continue using the words I have been using so far, or if some of them might not be the right choice for what I’m trying to communicate.

This post is about two terms that I’ve been thinking more about recently: ‘disabled’ and ‘differently abled’. Some see them as two different ways of saying pretty much the same thing, but for me they mean slightly different things, and I wouldn’t be comfortable replacing one for the other when talking about my son. So I would like to continue using both terms, but I feel I need to put it in writing why I cannot choose one or the other. If nothing else, writing it down should help me sort through my own thoughts, to clear my head…

One of the reasons for me thinking more about these two terms in particular this week, is this meme (would you call it that? Or ‘graphic’, or what…? See, here I go again with the questioning of my own vocabulary!), which I first posted about two years ago, and which facebook kindly reminded me about the other day:

Thinking back to when I wrote the text pictured above, I remember that it was – at least in part – as a reaction to some things I’d seen about how autism should be seen as just a different way of being, not as a disorder or disability. I’m not going to discuss the term ‘disorder’ in this post, as it’s not one I would normally use myself anyway, and I don’t want to go off on too many tangents.

So, in my ‘meme’ above, I wanted to explain that I see my child’s strengths and abilities, but I also see that he is disabled. (I also cannot fully embrace saying things like ‘being autistic is a gift’ or ‘autism is a super power’.)

However, looking back at what I wrote then, it’s mainly the term ‘differently abled’ which stands out to me as being potentially problematic, as I now know that it doesn’t sit right with everyone. So that’s what’s been on my mind…

The main reason why some don’t like the term ‘differently abled’, is because it’s sometimes used as a euphemism for ‘disabled’, making it *sound* more positive but essentially meaning the same. This can be taken as belittling the experience of being disabled, and also there is no real reason for using a different wording if being disabled is what you are talking about. ‘Disabled’ isn’t a dirty word!

So, in a way, the reasons why some don’t like the term ‘differently abled’, are actually not that dissimilar to my reasons for creating that ‘meme’ two years ago. The term ’disabled’ is a perfectly good word, it certainly has a use, and it does not need replacing with some vague, ’fluffy’ euphemism.

And yet, I still wan’t to keep on using the term ’differently abled’… But not as a synonym for ’disabled’. This is what I’m hoping to explain below, by defining the two different terms and how I think they apply to our son.

In what way is my son ‘disabled’?

According to the UK Equality Act (written in 2010), the definition of being disabled is to have “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities”.

My son, Penguin (that’s a nickname of his, not his real name), definitely fits in with that definition of not being able to do ‘normal daily activities’ in the ways most people can be expected to. And his not being able – his DISability – to do these things (at all or without significant support), is rooted in him being autistic and having a learning disability.

Slight sidetrack here: According to statistics, around 4 in 10 autistic people also have a learning disability. In our son’s case (as in many others if not most, as far as I’m aware), the autism and the learning disability are intrinsically linked. They affect each other, and it is rarely possible to say that a certain difficulty he has is due to either one of them, not the other. To me, it’s a bit as if you’d say that a person who is autistic and has Sensory Processing Disorder (SPD, which affects most autistic people, though often isn’t given a separate diagnosis if there already is a diagnosis of autism) struggles to cope with bright lights due to their sensory processing disorder and NOT due to them being autistic. It doesn’t really make sense to say that, because the autism and the SPD are so closely linked. And as I see it, it’s the same with Penguin’s autism and learning disability – they are so very closely intertwined with each other.

Back to my main point about Penguin being disabled: He is now 14 years old, and I can remember being his age. I could go shopping on my own, make myself something (albeit simple) to eat, take a shower or bath without needing any help or supervision, and I didn’t need support with things like going to the toilet, brushing my teeth, etc. Penguin needs significant support with all these things, so it’s most definitely fair to say he is disabled. (In addition, if I needed to ask for help, advice or directions, I could do so, and I had the ability to communicate with others in a range of ways, through phone calls or in writing, or by talking to them in person. Penguin is nonverbal/nonspeaking, and isn’t fluent in using any alternative forms of communication either.)

In what way is my son ‘differently abled’

As we’ve seen, the definition of ‘disabled’ is about not ebing able to do certain things that a non-disabled person could normally manage to do independently. They may well be able to do many of those things with the right help, such as personal support or certain equipment (and to some extent it can be argued that society ‘disables’ a person when it fails to make their daily life accessible). But as long as they cannot manage without those kinds of supports, they are still disabled, and I think that term works perfectly well for that definition.

However, there are ways that my son functions differently to most people, which aren’t about him not being able to manage daily activities. But which are still related to the same neurodevelopmental differences that are at the core of him being disabled.

For example, he has an amazing memory for certain things. Since a very young age, he’s been able to remember exactly where to find any favourite snippets from tv series he likes. When he was a toddler, we had quite a few VHS tapes (seems so long ago!) which I’d recorded various Cbeebies programs on, like Teletubbies, Roly Mo, Tweenies etc. And I soon realised that Penguin had stored in his mind not only which episodes to find on each tape, but also in what order they were. That was way beyond any kind of memory capacity/ability that I’ve ever had, and I wouldn’t hesitate to call it a ‘different’ ability (as in, different to what would be expected from most humans).

Later, when he started watching videos on YouTube, on a smartphone, he showed a similar ability of finding the exact few seconds he wanted to watch (as he likes to watch certain short sequences over and over again). For a very large number of videos, he knows precisely what point the scrollbar needs to go to, for that exact sequence he wants to watch.

He also has a kind of photographic memory for text elements, possibly with a degree of hyperlexia to it, although he isn’t literate, at least not in the usual sense. One of the first times that I realised that he actually recognised quite a few words in writing, was during a therapy session with the ‘autism team’ we had support from when he was younger. This was quite early on, and the special ed teacher had brought along some pictures for Penguin to match, such as simply matching the picture of an orange with another picture of an orange, just to get the concept of matching. The set she had brought with her also came with cards showing a word instead of a picture, so that – at a later stage – the task could be to match the picture to the corresponding word. As she was setting the activity up, Penguin matched the picture of an orange to the word orange! We had no idea before then, that he had any understanding of written words. After that occassion with the therapist, I went on to trying a similar setup with a few other words, and it turned out that he already recognised some names of animals as well as most colours.

Speaking of colours, this post from 2018 (which I’m sure some of you have read already, especially as I recently had reason to share about it again) describes another example of how Penguin’s mind (and in particular his visual memory) functions in extraordinary ways, which I’d say are definitely linked to him being autistic, but which have little to do with being disabled. ‘Differently abled’ fits well though, I think.

I suppose you could call these examples ‘special abilities’, as an alternative to ‘different abilities’. But it wouldn’t feel right to me to talk about my son as ‘specially abled’. That, to me, sounds very similar to saying ‘his autism is his super-power’, which then totally ignores all the significant difficulties he is living with. It ignores the fact that he is disabled.

The term ‘differently abled’ however, allows for including BOTH positive and negative aspects of my son’s functioning, while the term ‘disabled’ is the appropriate term when focusing on the things that are difficult or not possible for him to do.

I’ve been considering the term ‘neurodivergent’ as an alternative to ‘differently abled’. But I think the latter one is more straight to the point, more ‘plain speaking’, less abstract. Also, the term ‘neurodivergent’ is more closely related to the neurodiversity movement, and there are some sides to that which I’m not fully comfortable with (the movement can, in my experience, sometimes be quite aggressive and militant, hateful even, and some of them tend to marginalise those with learning disability, as they can be more complex to fit into their narrative).

I don’t have all the answers though! This post has been about explaining my reasons for using these terms, for airing my perspectives and for sorting out my own thoughts by writing them down. I don’t expect everyone to share my views and reasoning, as we are all shaped by our differing experiences, throughout life. We can have understanding for each other even when we disagree, and we can remain respectful even when we don’t fully understand another person’s perspective.

As a final point, I’d like to remind everyone that while being disabled means being less able to do certain things, it absolutely does NOT mean being of less worth, nor does it mean having less potential for being happy, and for having a life worth living (as I wrote about in a recent post here).

Thank you for reading! I’d love to hear if you have any thoughts or opinions on what I’ve been discussing in this post, so please leave a comment below. Until next time, stay safe x

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