ALL UP IN YOUR SPACE: WHEELCHICHOME

Vicki from @WheelChicHome is one of those people both of us speak to a lot on Instagram. We’ve always loved her home, and had ALL of the time for her work around #inclusivechic and MS awareness, so we were ruddy delighted when she said we could come over and meet her and her husband Michael in person. Michael has MS and uses a wheelchair and crutches to get around most of the time, and neither of us really had any inkling just how much that affects decor decision-making. But enough from us – it’s better told in their words.

Robyn: we love your kitchen, was it this layout when you arrived?

Vicki: yeah it was this exact layout but it was white and had the ugly grey work surface

Michael: and the worktops in the estate agent’s photos were a nice marble top but when we got here they’d ripped it out and put in this cheap nasty grey one

Vicki: and then his brother tiled this in herringbone

Michael: it took double the time. He was blessing us

Vicki: the tiles were only ten pounds a box and then I painted everything but as you can see, Michael’s reversing and it’s a tight fit. We need the doorways widening – there are chips everywhere

Robyn: I saw DIY SOS last week and they made over a house with a wheelchair user and the sink and cooker could go up and down – it was amazing

Vicki: whenever we redo the kitchen we’ll do that. You have to think of things, like… everything in the fridge is on the bottom shelves so Micheal can reach, and the crockery is in the lower drawers and so on

Emma: is it prohibitively expensive to get those kind of gadgets – can you get support with the cost?

Vicki: you can get grants but it we don’t know what they’re offering. You can get kitchen bits that have handles or buttons, and he’s a gadget man so we’d go for that

Michael: yeah, anything with a button I’m happy with

Vicki: you can also get bathroom sinks that go up and down, but we’ll do that next time because it’s so expensive. We just got a quote to make the garden accessible and that was £6000. Which I guess is cheaper than the £12000 we were quoted before…

Michael: you can get grants for it but it’s often means tested. The only quota I get is my PRP or disability allowance and that’s £100 a week and half of that goes towards the car. So the remainder is meant to pay for bits around the house or for the wheelchair. Of course it doesn’t cover everything so you’re always down

Vicki: I think you can get additional grants for up to £1500 but they are means tested

Robyn: and has that become more difficult now?

Michael: oh, the hoops I have to go through to get my disability benefit. I have to fill in a form that takes three hours every three years, even though I have a degenerative condition

Vicki: He doesn’t get the full amount currently. He’d get more if he needed dressing or bathing, but even that’s only another ten or twenty quid. I don’t know how people live on it who don’t have any other income

Robyn: so no consideration is given to people having a ‘normal’ life or a functional home?

Vicki: I’ll show you the problems with the garden. This step down from the house and the path up to the home office is what we need to fix. Now Michael is working from home it would be great if he had access to his office at the other end of the garden.

Michael: really that means Vicki wants to get rid of all of my stuff and hide it in the office

Vicki: the kitchen is where he currently works but it’d be great for him to be able to get out to that office because it’s a really big, nice space

Robyn: do you get offers of support from brands?

Vicki: we don’t, you know, because my following isn’t big enough. It’s very niche. When I do a post about disability it tends to get fewer likes. A lot of instagrammers who have accessible homes don’t post about it because their followers don’t really like it

Emma: I wonder what it is? Why would people be like that – do they not want to be seen as liking something..?

Robyn: maybe it’s something they don’t feel comfortable confronting so they just completely switch off from it

Michael: or maybe it’s like ‘here’s a beautiful photo of a room’ but it focusses on a grab handle and that spoils the lines

Emma: that makes me so mad

Vicki: I get so discouraged, as you really try and so many people say you’re doing such a wonderful thing but the feed is in a bit of a slump

Emma: so, talk to me about the Star Wars and space things?

Michael: it’s probably not very Instagrammable, but I was born a week before they took off in the Apollo rocket. And I love Lego

Vicki: and you’re addicted to space stuff. We spent our anniversary in the Kennedy Space Centre last year

Robyn: how did you meet? Cos you’re pretty different characters

Vicki: we met online, but it was a very different time then! You didn’t know whether to tell people or not.

Robyn: and then, Michael, when did you get your diagnosis?

Michael: three months after we were married. It was just a gradual decline – I broke my leg and ankle in a couple of places after my sister passed away. I’d gone to Scotland to see a friend and had a fall but was much heavier at the time and thought, ‘Well, you’ve fallen over, you’re 17 stone – it’s going to break’. I got better but the physio said, ‘Oh your balance is a bit awful’. Looking back, I can see the pointers now. There was a time I took a trip down to the coast and my legs went from underneath me, but I was on a diet and thought I was having a sugar low. Then over time walking became more difficult, distances decreased and then I started to wobble

Emma: what was the time from you just thinking this was a sugar low to you getting your diagnosis?

Michael: nine years

Emma: so really a gradual thing that you don’t notice?

Michael: yeah, I just thought I had a weak ankle. I fell down the steps in Starbucks on our second date

Vicki: and he covered himself with hot chocolate! And we went for a walk down a riverbank when we were first dating and he rolled down the riverbank. I had a new car and was like, ‘You aren’t getting in this car covered in mud’ so he had to sit on a load of carrier bags. I think I sort of half diagnosed you when we first lived together without knowing I had. I noticed what was happening and that your brain didn’t seem to be telling your leg what to do cos you’d fall over a lot. That’s what MS is, the message isn’t getting through. The coating of the nerves breaks down. Like when the coating of a pair of headphones go and you have to wiggle it to make it work, and then eventually it will give up altogether

Michael: so what I should do is wiggle my ears and see what happens?

Vicki: when we got the diagnosis, we promised ourselves not to Dr Google and look up what might or might not happen. We went on the MS Society website and got the facts and left it at that. And then when you got your final diagnosis we came out the hospital, gave each other a hug, had a little cry and then promised not to get upset about it again. Michael does get frustrated and some days are better than others. The heat isn’t great for it

Micheal: it just sucks your energy, your legs seize up, it’s horrible

Emma: oh, why is that?

Micheal: they’re not sure but one theory is about when you get hotter, everything expands. The nerves in your head get bigger and the ones that don’t have a coating rub together and short-circuit

Vicki: most people who have MS are in colder climes. They think it might be a vitamin D thing. People in Kenya don’t tend to have it but in Scotland they do

Robyn: that is fascinating!

Vicki: there are three different kinds of MS: relapse remitting which comes and then goes, then there’s secondary progressive and primary progressive – which only 10-15% people with MS have – that starts and just gets worse. That’s what Michael has. You have to be thankful for small mercies, though, as this kind doesn’t tend to affect your sight and your cognitive functions – it’s more balance and leg-related.

Michael: I’m lucky I haven’t lost my sight; my cognitive function is pretty good and I’m still working

Emma: what do you do?

Michael: I’m a software development manager

Robyn: is it lonely working from home?

Michael: yes! Some days I don’t speak to anyone until Vicki gets back. They closed the office I worked in so we all work from home now. The plus side is all the laundry gets done…

Robyn: will you look for something else?

Michael: yes, I’ve got my eyes open just in case, but I ideally don’t want to travel too far

Robyn: cos travel can be a nightmare for a wheelchair users?

Micheal: yes, some companies don’t have the right parking or are upstairs, so you need to work all that out before you even apply

Robyn: I’m terrible working from home on my own, but you love it, don’t you Emma?

Emma: I LOVE being by myself because I’m a bit of an introvert, but I have noticed after working in an office more this year is that if I’m on my own for a few days I do get a bit blue

Micheal: I’ll go out to Starbucks or something so I feel like I’m doing something

Vicki: but that’s why the office is so important in the garden – it gives him the separation

Emma: how much do you have to consider your interiors when you’re a wheelchair user? It sounds like there’s a big decision behind every facet of it

Vicki: it’s with everything. Even the tap. With the old kitchen tap the lever was on the top; with the new one it’s on the side so it’s nearer. The spare bedroom – we had a bed in there but he couldn’t get the chair round it, so we got a smaller one so Michael could do things like close the curtains easily

Michael: or things like tables. They need to be solid to take my weight so I can transfer, and some tables have things at the end like a crossbar, which won’t work with the chair, so we need a table with four legs. The sofa’s too low and on the way out so we want an electric recliner, but we have to know is it firm enough, is it high enough, you can’t have leather in case I spasm as I’ll slide off and there’s nothing to grip. It’s endless

Vicki: it impacts all the decisions; you’ll see the furniture is all against the walls. We had to get rid of the rug in the living room because wheelchairs don’t like rugs. And that’s why I started the blog, because it’s not just hoists, it’s all the little things. Just finding things that are functional that don’t look like medical furniture

Micheal: that’s what I was keen on, I don’t want things to look like medical furniture

Emma: are there brands making things for those on crutches and wheelchair users?

Vicki: there are a few good ones like Motionspot, Blue Badge Style and Rails Direct but lots of brands are geared towards old folks so it’s all paisley velour. The market is growing but it’s minimum. We just have to find our own way looking for stuff. Howdens are good – they have cabinets you can pull down and wardrobes that do the same. There are some things out there

Emma: it would be great if a big brand was producing that kind of thing

Vickie: There’s some mainstream retailers like Victoria Plumb and Nicholls and Clarke doing things but I really wish there were more though.

Robyn: wouldn’t it be good for someone like Ikea to be doing this as a proportionate amount of their customers would need it so it must be profitable?

Vicki: when I first started the blog I really wanted to design a grab rail, but what people need is so varied and that’s the challenge. But I think what people need in general is clean, wide space, clear sight, and things within reach. AND to not tip over

Micheal: the boards in the bathroom are the only visible things we have but the only ones we could find were white wood.

Vicki: we wanted something cool like teak or something but they just don’t do them. Someone did a really interesting post on the cost of disability and it’s true it’s so expensive. The boards aren’t amazing but they are £30 each and then there’s grab rails and things and it all adds up. Or the wheelchair. A NHS issue one is 14 kilos so we are lucky enough that we could afford a nice, slim lightweight one but that cost about £5000. I don’t know how people live on their £400 PRP payment.

Michael: yes, you can ask the council to fit these things but they’ll be the cheapest, hospital issue models

Vicki: You can get a grant for a walk-in shower but it’ll be basic white and I understand that’s functional but it’s not right for us. And we might get to the stage where we have something more visible like hoists but even they can be fairly subtle now.

Robyn: how did you find your current space?

Vicki: we saw 55 bungalows before we found this one. Our old house was a Victorian semi-detached with a steep staircase. So many had little problems like a little ledge going up to the bathroom or kitchen.  Plus, bungalows are really in-demand as builders buy and convert them. So what we ended up with is a really lovely house, but with smaller rooms because the last owner added another bedroom

Emma: a bungalow is kind of my dream

Vicki: yeah, if we had more money we’d move to somewhere bigger, probably. Bungalows are so expensive, 50-80 grand more than a house because of the plot size

Emma: woah!

Robyn: you love a bungalow don’t you Emma?

Emma: I really do. I like the idea of living on one level, all spread out

Michael: and not having to hoover the stairs

Robyn: yes, because the murderers always hide upstairs

Emma: or chase you up the stairs. It says a lot about us that that’s why we like bungalows

Vicki: shall I show you around?

Both: ohhhh yes please

Vicki: so you can see we’ve pushed our bed up against the wall so it’s accessible for the chair plus there’s a grab rail and the lamps aren’t freestanding so Michael doesn’t have to reach. And we have a divan bed he can easily get in and out

Robyn: good use of an umbrella stand for the crutches

Vicki: yeah, unfortunately I think the crutches can go away now as Michael isn’t really walking anymore. With him being at home, I’m far more comfortable with him being in the chair so there’s less chance of him having a fall

Emma: how do you let someone know if you do have a fall?

Michael: apple watch! I can be Dick Tracy and make calls

Robyn: and do you get therapy for your condition?

Michael: unfortunately, not much. The physios are stretched so thin. Our MS nurse works two half days a week and covers a massive area so I’ve only seen her a couple of times

Vicki: I’m excited about making over the hall because it’s the space that’s the biggest challenge as it’s so narrow and gets really scuffed with the chair. I’ve seen some Dowsing and Reynolds tiles that are thin enough that we won’t lose any width. They’re only a millimeter thick.

Emma: Michael, do you have much input on the design?

Michael: I tend to get, ‘Thank you very much for your opinion, I have discarded it’.

Robyn: yeah, same with my husband

Vicki: so, here in the lounge everything is pushed back for Micheal to manoeuvre. Where he sits is important too, so he’s not doing a 180 degree switch. Then we’ve got clever side tables for eating from and I’d have liked a glass coffee table, but that’s not an option.

Robyn: yes, murder coffee table

Emma: did you say murder coffee table?

Robyn: yeah cos you’ll be dead if you fall through it

Emma: fair

Vicki: the small rooms make it tough, though

Robyn: will you move again because of that?

Vicki: I think we’d rather do an extension because we love living in a cul-de-sac – it’s so quiet.

Robyn: Would you ever do a show like DIY SOS?

Michael: I don’t think so, because there are more deserving families than us

Vicki: we did speak to a production company for a show all about accessible homes, and they had presenters lined up with experience of living with someone with a disability. In the end though the BBC rejected it because they don’t want to ghetto-ize disability. They want people to be represented in mainstream tv

Emma: yes, if people were properly represented that would be fine but they really aren’t so it seems like a good idea to give people a voice

Robyn: yeah, that seems kind of ridiculous

Vicki: but it is getting better. We were watching a property show recently and in the middle there was a Wickes advert with a dude in a wheelchair unloading the dishwasher and we were both amazed

Emma: I’m interested – you’re both active on social media – how is that for you? Is there lots of support? Are people good?

Vicki: from my perspective, there’s a lady called Vela who’s @theinclusivehome, and together we have a hashtag called #inclusivechic but unfortunately fairly few people participate

Robyn: what are you encouraging people to share?

Vicki: it’s not just people’s homes – it’s if you see a great thing in a hotel or when you’re out and about. So someone the other day was at a press show and posted a nice accessible sink with larger taps, and a sink you could get under, and then another with brightly coloured taps which are great for people with sight issues or dementia. But a lot of people don’t know to post things like that. People think of it when it’s mentioned but it’s not in the front of their mind

Michael: a lot of people who follow me also have MS and they share their experiences and tips and things like that. It’s a support network more than anything else

Vicki: for example: someone got in touch with me whose husband has been in a wheelchair for 19 years, because she saw Emma talking about us on her stories. It’s the ‘mainstream accounts’ sharing that really help. It’s really hard to get the word out, even though there are lots of us about. There’s people like @lavenderslongshot who I just did a blog post about as she’s remodelling her house in the U.S. But I do know that some of the people living in accessible homes won’t share those bits because the posts don’t do well

Emma: I’m really interested that people are reluctant to post as I’ve walked round your home and there’s nothing I’ve seen so far that I’d even think was there for your MS – it just feels like a beautiful home to me

Vicki: did you see the grab rail in the bathroom?

Robyn: no? Where???

Vicki: it’s the toilet roll holder.

Robyn: I did not notice that at all

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Vicki: yep, we got it from America. The bathroom is the place it’s most visible as well, as there’s a few grab rails and the boards

Emma: and yet we both didn’t really notice.

Robyn: are your friends and family supportive?

Michael: so my family are amazing. My Mum tried to apologise to me for the fact that I have MS… but a few friends have drifted away

Vicki: and my family and friends have gathered round, my sister works for the NHS and has been great. And I’m very practical so we just make things work. It’s difficult to just go round to a friend’s house as there might be gravel on the drive, awkward steps, no downstairs toilet, no handrails etc. People tend to come to us just for ease.

Michael: we entertain so much more here than we did in the old house

Vicki: family are great. My niece is eight and she tries to help get Michael out of the wheelchair and has done since she’s been about three

Emma: children are so good for things like that – just so direct and unfazed by things

Michael: Jake, our nephew, said when he was younger, ‘Can you fix Uncle Michael?’ and you said, ‘No they can’t’ and he replied, ‘Well Bob the Builder could’. He’s fourteen now and we tease him about that all the time. I’ll be taking him to the cinema later

Robyn: it’s so nice that they’re so close to you and you hang out

And we bloody loved hanging out with them both too – Vicki and Michael, you are both excellent people with very strong opinions on pear-based desserts…

Quick question rhyme time

• Watch a romantic movie or love a good scare?

Michael: I’m a scaredy cat really, and who doesn’t love ‘love actually’

Vicki: Romantic movie

• What’s the one sound you cannot bear?

Michael: Nails scratching a chalkboard

Vicki: Other people eating  

• Have conchiglie for nails or spaghetti for hair?

Michael: Has to be hair. Nails are a nightmare with a wheelchair – also you are always guaranteed a meal with every haircut

Vicki: Spaghetti for hair, clearly!

• Love furniture more or clothes you can wear?

Michael: Clothes

Vicki: Hhmmm.  Clothes.  That fit.

• Truth or dare?

Michael: Truth – it might be uncomfortable but at least destiny is in your own hands

Vicki: Truth

• Favourite ride at the fair?

Vicki: Dodgems

Micheal: I love a rollercoaster, but otherwise I liked the dogems when I was younger!

• Most delicious dessert involving a pear?

Vicki: None. Throw it in the bin.

Micheal: I’m not sure there is such I thing! Perhaps a pair of ‘sticky toffee puds’

• Best way to get out of paying a fare?

Vicki: Travel with a wheelchair user, you get to go through gates without being checked.

Micheal: Busses are free for wheelchair users, but I don’t recommend needing a wheelchair for just that!

• Last time you said, ‘I don’t care’?

Vicki: Yesterday  

Micheal: ‘I don’t care’? Can’t remember! I probably have done at some point – but I’m more of a ‘I don’t mind’ person to fit in with everyone else. 

• If you could be anywhere, that would be where? 

Vicki: Lake Louise in Canada.

Micheal: Somewhere that’s not too hot!

For more information on Multiple Sclerosis visit the MS Society