Squirming at Grubs

Why people can’t get their heads round Hannah being with Shane — and why Hannah should be nicer about that.

The cover of Shane’s book about his life with Hannah

This is probably going to be a very un-PC first attempt at a Medium posting. You have been warned. Get used to it. I’m going to try and articulate some thoughts I’m wrestling with, which I reserve the right to evolve, as well as the language I use in describing them, if it comes across as clumsy.

Firstly, it would help the reader to get familiar with Squirmy & Grubs, a YouTube channel by and about the “interabled” lives of Hannah, who is (frankly quite magnificently) able-bodied and Shane, who suffers from Spinal Muscular Atrophy, meaning he essentially has the head of a grown-up on a largely non-functioning 7-year-old’s body. Warning: addictive.

There are numerous conspiracy theories about this couple, for reasons that become obvious after two minutes of watching them. It is beyond the comprehension of many people that these two might genuinely be together. She is not just not disabled; she’s extraordinarily attractive and a former college athlete. He is not just disabled; he cannot take a shower, turn over in bed or get dressed without immense assistance, which Hannah gives to him effectively 24/7. The mind boggles at first, and some people cannot get past the dissonance.

On top of the multiple comments about how one or both are actors, or she is in it for the money (even though he actually has quite a normal life expectancy and it seems quite clear they are not rolling in cash), there is a lot of resentment from people along the lines of “how can HE have a smoking hot girlfriend and I can’t get a date?”

Hannah rebuts this strongly by saying that anyone who has the kind of thinking to ask such a question has answered it already, ie they are bad for even thinking it, and that’s why they don’t have a girlfriend. It was this comment in particular that got me thinking and inspired me to write this post, because it’s more or less what I thought too.

I thought this rebuke was not particularly profound, and there was more to both the original comment, her response, and perhaps her own personality traits which led her to be in this unusual relationship.

Here is what I concluded.

However much Hannah and Shane portray “interabled” relationships as perfectly normal — and I wholeheartedly support their efforts to normalise them — they must recognise that they are not normative, especially at the extremes of difference in physical ability such as their case.

(At this point, some of you probably need to take a deep breath and look up the word normative.)

Now, they are not normative for two reasons. One is that most societies have historically struggled with people who “date different”, whether same-sex, inter-racial, across age or class gaps, or indeed “interabled”. This is an issue of nurture which is changing very rapidly. But nature is hard-wired, and some types of partnership run against what we are programmed to do — reproduce in a way that is likeliest to deliver the healthiest offspring and protect the tribe.

That is not to say they are wrong; as modern society has evolved (not just philosophically but in terms of medicine, travel and other barrier-breakers), we are able to absorb more non-normative relationships, to the extent that many become normative. The advent of equal rights for gay couples is an obvious example, as is the acceptance of multi-ethnic relationships.

So some of the knee-jerk reactions to Hannah and Shane are quite understandable (the ones where our instinct is that something doesn’t seem natural), whilst others are unpleasant (the ones where bigotry and jealousy are at the root). There is no need to dignify the latter, but the former bears some more thought.

How come Hannah did not have (or suppressed) these reactions at the beginning?

At quite a few points, we find out a little about their politics. Hannah went to a particularly liberal college, and there is one point where I actively cringed and my mouse lingered over the unsubscribe button, where they explained that recently they had chosen not to post anything because “they did not want to silence any black voices” due to their presumed white privilege of speaking from the platform they have worked hard to create in the face of adversity — one of the most woke and utterly ironic statements I have ever heard, coming from a wheelchair-bound essential quadriplegic and his companion who has chosen to spend her entire life by his side, including holding him up on the toilet — hardly much of a privilege. I wonder how many black people watch their channel and wish they could swap places with those lucky white folk.

I think it takes someone with an unbelievably open mind (one that is probably by nature comfortable outside the normative and by nurture seeking opportunities to demonstrate this) to see past Shane’s level of disability as quickly as Hannah did. They met online and declared their love for each other before they even met, by the way.

I would not, as Hannah and Shane do (for reference see their clip about not appearing on Dr Phil), criticise the large number of people who may not see past a serious disability when making initial dating decisions, any more than I believe people have the right to prefer men over women, tall guys, women with big boobs, or any other proclivity you care to mention. One hopes that this preference does not rule out a willingness to explore one’s own boundaries and even experiment outside one’s comfort zone, but nature and nurture guide us all to different levels of tolerance for what can feel like a risk.

In many ways, then, Hannah is as much a rarity mentally as Shane is physically, in that she set out from the get-go to see past the disability (or — let’s be open-minded — possibly even had a proclivity towards it!).

As several people have commented on their channel, they “came for Hannah and stayed for Shane”. She seems like a smart and kind person as well as being very easy on the eye, but Shane is quite extraordinary. He has a brilliant mind and a sharp wit, and is ruthlessly and darkly self-deprecating to the point where even Hannah is sometimes taken aback. He is actually cocky.

He set up a charity to help others through telling his own story, has published books about his life, and seems to have worked out how to be financially independent despite what would be utterly debilitating to most people. He does it all with an almost unnerving ease and humour. He’s constantly looking to improve every aspect of his life, physically, financially, intellectually and emotionally. He has ambition.

Once I got to know Shane, then, I realised quite quickly why Hannah was with him, and also why her reply to the nasty comments missed a great teaching opportunity. Shane is the very best version of Shane he can be, and that’s what she fell in love with.

The lesson here for those embittered people is not (necessarily) that they are bad people for thinking and writing jealous things. It is that if they want to find someone wonderful and willing to devote their lives to them, and to whom they want to commit the same, they have to be the best version of themselves that they can be, and then not rest on their laurels but push higher still.

This is what their relationship, as non-normative as it might be for many or most of us, has taught me. I also know that I’m not normative in a whole host of ways, so I had better work out how to harness and own that as well as Shane has if I am to achieve my own potential.

So I wish Hannah and Shane all the fulfillment they deserve in their lives together, and I hope all the various grubby commenters find a way not to let their own soulmate squirm from their grasp by either not seeing past the norm or failing to be as accomplished as possible.

Which leads us neatly to my next post, about accomplishment vs success...

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Flâneur, gourmand, dilettante, francophone. Prophet, therapist, egomaniac, wandering Jew. I like to say entrepreneur too but that’s just French for unemployed.

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Michael Freedman

Flâneur, gourmand, dilettante, francophone. Prophet, therapist, egomaniac, wandering Jew. I like to say entrepreneur too but that’s just French for unemployed.