She’s the beauty influencer with the brightest palette, but Tess Daly’s account is also a space of positivity and conversation, and now the platform where she shares her journey as the UK’s first person to have the latest treatment for spinal muscular atrophy. Here, we catch up with Tess about shielding in lockdown, representation, and why she doesn’t want to be called ‘brave’

Hi Tess! How has your lockdown experience been so far?

I’m classed as a vulnerable person, so I was told to shield, and I was quite concerned initially because I can’t be on my own – I have a team of carers who work 24/7 on rotation. It’s alright me staying in the house, but if I’ve got carers coming in, who also work in hospitals, it’s like living in a colander – there are lots of little holes in the airtight situation. So, I had to stop the carers coming in for a while, which was an extremely difficult decision. And then one of my carers moved in with me.

At the back of my mind, my worry there was that she’s not one of the carers that typically does makeup with me. I thought, for the foreseeable, I wasn’t going to be able to do my makeup or Instagram. I wasn’t going to have that creative outlet.

So, I had a bit of a decision to make in terms of: “Right, you either decide that you’re not going to do content, and what will be will be, or you can learn to do it yourself and try to figure out a way of getting round the things that you can’t do.” I was able to still keep creating content, which I’m super, super, proud of.

"To me, makeup is art, it’s creativity, it’s freedom"

Did your relationship with makeup change in lockdown?

For me, makeup isn’t something I wear to go out in. To me, makeup is art, it’s creativity, it’s freedom.

My conundrum at the beginning of lockdown was: “I’m going to have that taken away from me for X amount of time.” I was feeling quite emotional about that. I’ve definitely got a sense of independence with it now. On days where I do makeup, I just feel so much more empowered.

Do you see a relationship between makeup and mental health?

I’ll be totally honest, I never did before. I never realised how key it was for me in keeping me busy. Lockdown has proven to me that without the makeup, and without my outlet, my passion and my creativity, I would struggle.

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On World Mental Health Day 2020, you did a post on Instagram about the reality of social media. Why did you choose social media as your focus?

I had a look at things and thought: “Is there anything that affects my mood and how I feel?” For me, and for a lot of people, it’s social media. It affects us without us realising, and that’s why I wanted to say that it really is just a highlight reel of your life.

Most people don’t put their sad or tough times on Instagram. Granted, there are some people who do and are cherished for that, because we need to see more of that.

You tapped into that by then posting a series of behind the scenes photos – images you wouldn’t normally show publicly. Was that difficult to do in front of 200k followers?

I literally sat there for half an hour scrolling through my backlog of ridiculous photos and just came up with some hideous examples of real life. I’d say, in the back of my mind, I thought: “Oh, God, you’re putting some really ugly photos up here Tess, what are you doing?” But, I was like: “Do you know what, that’s what this post is about. That’s what you really look like, when you have not got the lighting on, and you’re not posing, and you’re not tucking your double chin away.” I just had to press ‘post’, and hope for the best.

Recently, you’ve been sharing updates on a new treatment for spinal muscular atrophy you’ve begun. What has the experience of sharing it online been like?

I’m the first person in the UK to be receiving this treatment – so I’ve got nobody’s experiences to draw on. I know that I want to see the people who are a couple of months ahead of me. I want to see the effects, I want to see the challenges. I originally started filming for people who have the same disability, but now I’m just telling my story. I’ve been laying in bed at night, reading all the comments, and just feeling so overwhelmed by all the support that I’ve had.

"People have got no right to assume that our lives are inherently bad, sad, and pathetic"

At the end of one of your videos, you asked people not to call you ‘brave’ and ‘strong’. Why is that language problematic?

It’s reductive in the sense that, I’m just a person with a disability, I’m not an alien. I’m literally just like you, but I can’t walk. When people say things like: “You’re so brave”, I ask people to dig deeper and say: “Why am I brave?” It ends up being: “Well, I just don’t think I could do what you do.” “Right, OK, why not?” “Well, because –” And we get to the crux of the matter, and the crux of the matter is that if you had my life, you would see it as unbearable. I don’t know any different.

We need to stop with the stereotypical, reductive language. Because people have got no right to assume that our lives are inherently bad, sad, and pathetic.

Within your lifetime, do you think general understanding of, and attitudes towards, disability has has improved?

Yes, I definitely think so. When I was younger – and I hate saying this about myself – but I had nobody who looked like me in the public eye. Now, there’s more disabled influencers than I can shake a stick at! And that’s good, we want more diversity, we are just people. I can’t stress that enough, we’re not special, we are literally just people.

You work closely with the fashion and beauty industry? Do you think those industries, specifically, are improving?

Definitely. Unfortunately, whether it’s a fad and ticking boxes, I don’t know – that’s the cynic in me. I do feel like people, as in the general public, are asking for more diversity, and when they see it on a brand’s feed, they praise it, and they say: “This is the type of content we want to see.”

It’s like the chicken and the egg: what came first? Is the brand actually trying to do better, because they know that they need to do better, or is it because it’s ticking the diversity boxes? Because this does happen every couple of years. We’ll start having TV shows with disabled people in, or we’ll have shop windows with a mannequin in a wheelchair, and then it dies down again. So, ask me again in a couple of years.

That brings me nicely on to my last question: What are you looking forward to in 2021?

I am just looking forward to doing more of what I’m doing now, and creating the content that I love. I just want to be happy, I want to be surrounded by the people I love, and I want to be doing the things that I love. Bottom line, that is all that’s important to me at this moment in time.

Follow Tess on Instagram @tess.daly