These prosthetic limbs are walking works of art

Arts

The Alternative Limb Project is on a mission to transform lives, one limb at a time. Set up by Sophie Oliveira Barata in 2011, this first-of-its-kind company is rewriting the rulebook on prosthetics. From legs made of crystal, to arms spouting snakes, every piece is completely bespoke. It is medical treatment crossed with craft and technology, with a human being right at the end of it.

“I had a seed in my head of doing something different, but I wanted to take it that much further,” said Sophie, who started the company after nearly a decade working with medical prosthetics. “I wanted to create pieces that would be seen as art in their own right.”

Her walking pieces of art have been commissioned from as far as Papua New Guinea, Brazil and the United States. Sophie works in collaboration with the AltLimbPro team to design and create limbs to bring each customer’s proposal to life. Prosthetic self-expression doesn’t come cheap, however, with a limb costing anywhere from £6,000 to £12,000.

Sophie says the possibilities for design are endless. Wood, plastic, ceramic, you name it – these are the prosthetic limbs of the future.

James Young and his Metal Gear Solid Phantom limb

“Once I read a great line which stuck in my head, where a prosthetic user said, ‘I want to take off my limb and leave it in a room, and people will recognise it and know that it belongs to me. It reflects part of my personality’. I totally connected with that idea.”

Grace Mandeville wearing her Feather Armour

“I’ve worn prosthetic arms that look real and they just get in the way. They look normal, but I don’t really want to look normal, so this is like the perfect prosthetic arm. I’m into fashion, and I thought, ‘What’s more awesome than wearing an arm like that?’”

Kiera Roche and her Floral Porcelain Leg

“In the first few years [of being an amputee] my focus was on trying to be normal – wearing clothes that hid the fact that I was an amputee. Over the years I have become more comfortable with who I am. I think losing a limb has a massive impact on one’s self esteem and body image. Having a beautifully crafted limb designed for you makes you feel special.”

Ryan Seary, ex-serviceman wearing his Anatomical Leg

“Whilst carrying out a high risk search in Helmand I stepped on a LMC pressure plate, it partially detonated which removed my left foot and hand at the scene. My team provided initial first aid before I was flown back to Bastion in a record of 17 minutes (record at the time) . At Bastion my left leg was removed above the knee and my left arm above the elbow.

When I received the leg it was better than I could have imagined. I can’t get over how realistic the foot looks. Many people have taken a few seconds to get their mind round the fact that it’s not real. Often young children will be confused and want to ask about or touch my leg but that’s only natural curiosity.”

Viktoria Modesta, the world’s first amputee pop star, Spike and crystal leg

“I’ve been asked if I feel I represent disability, and I don’t think I do. I represent the feeling that you have a choice to create your own identity.”

Snake Arm, worn by Jo-Jo Cranfield, British Swimmer, Motivational/Inspirational Speaker and Swimming Teacher

“I’ve never seen the interest in having a prosthetic arm. They are heavy, uncomfortable and not at all practical. I love the fact that having one arm makes me effortlessly different to the majority of people. My alternative limb is so different to any other prosthetic limb I have ever had. I wear it with pride. I’ve never seen a two-armed person with snakes crawling into their skin, and even if I did I don’t think it would be so comfy! My alternative arm makes me feel powerful, different and sexy.”

Images Credit: Omkaar Kotedia

If I ruled the world… I would overhaul the social care system

Opinion, Politics

Adult social care is in crisis. Poet Jamie Hale offers their radical idea for change

If I ruled the world, social care would be free. Disabled people would have control of their own lives and a lack of support wouldn’t leave us trapped.

I am in my mid-twenties and use a wheelchair. I need support for everything, from turning in bed to leaving the house. However, my impairment isn’t the biggest impediment in my life. Instead, it’s a lack of care. Someone, somewhere, has decided that four short care visits a day is enough for me to lead an independent, fulfilling life.

This means that if my catheter leaks at 10pm, I am left lying in a wet bed until my care assistant comes the next morning. This means that I am often forced to wear incontinence pads – not because I need to, but because most of the time there is no one there to take me to the toilet. This means pressure sores, hospitalisation, and indignity. I rely on my housemate to voluntarily help in an emergency, but he has a full-time job and can’t give me the support I need. I want to study a Masters, and develop a career as a poet and writer, but without enough care, these things are just not possible. Ideally, I would receive live-in or 24-hour assistance, but my social care plan doesn’t allow this. I am imprisoned in my own home.

Social care is provided to disabled people who are unable to complete essential tasks of daily living without support. It is not free and even people on benefits, some who can’t work, typically have to contribute towards cost of care. Local authorities do have have the power to cover costs, although this is ‘means-tested’.

Qualifying for social care has become increasingly strict since 2010, with government cuts impacting people’s lives significantly. A prime example of this was the closure of the Independent Living Fund (ILF) in 2015. This was a ring-fenced £320m fund that helped care for people with high-support needs – one that no longer exists and leaves care plans extremely limited. Since 2011, there has been a £4.6bn reduction in local authority social care budgets, with people all over the country losing a huge amount of their care hours. People are frequently given as little as two hours a week to leave the house, during which time they’re expected to go to medical appointments, do their shopping and socialise.

Unsurprisingly, this means they are restricted from having hobbies and social lives, as they’re not given enough care to do these things. This further disables us, leaving us trapped in our own homes, causing anxiety, depression, and isolation. Worse still, cuts to funding overnight care means people who need significant night-time assistance are being forced to live in care homes regardless of their preference, because it’s cheaper than supporting them to live independently.

When I told my social worker that my situation was untenable, I was threatened with the suggestion that the only alternative would be a care home. This keeps me from pushing for improvements because I’m terrified of being warehoused and locked away at a time when I want to be studying, developing interests, and socialising, just like anyone else my age. I’m not asking for anything more than what abled people get automatically. I’m asking to be able to use the toilet in the night if I need it, or have my bed changed following a catheter bag leak, instead of me being left to lie there and wait for morning knowing this may result in another six months of pressure sores.

The focus of social care needs to change. Rather than just satisfying basic human needs, like being fed and watered, social care needs to give people all the funding they need to live independent lives – lives in which they make their own choices about how they want to spend their time and aren’t prevented from doing so due to a lack of care. Disabled people too have dignity and we don’t deserve the demeaning situations that non-disabled people don’t have to deal with.

YouTube queen Sitting Pretty Lolo talks sex, style and success

Lifestyle

Lolo stops mid-sentence: “Hold on, I’m sorry.” She adjusts the camera angle as we settle down to Skype. “This is just the kind of thing I pay attention to,” she says. “It’s the vlogger in me.”

It’s been over two years since Lolo posted her first video on her YouTube channel, Sitting Pretty Lolo. The video – a mishmash of holiday selfies and snapchats from a birthday trip to Miami – is pretty rudimentary, but she says it was important to her to talk about travel as a disabled person: “Also I was really drunk the whole time and I wanted to show people I can party. Plus they had beach wheelchairs, which I didn’t even know existed until I went to Miami.”

Her channel now has over 8,000 subscribers (“subs”, as she calls them), and she answers their comments almost without fail. That must be time-consuming, I say. She makes a garbled noise: “It definitely takes up some time, I’m not gonna lie. One time I posted a video and there was like almost a hundred comments immediately, and I was like, ‘Oh SHIT, what am I gonna do now?’” But engagement with subscribers is at the heart of Sitting Pretty and she’s managing it by multi-tasking (“double-dutying it”).

At the age of 14, Lolo was diagnosed with ALS – a degenerative motor neurone disease that, among other symptoms, causes the muscles to gradually waste away. But 16 years later, she’s not only tripled the life expectancy of someone with ALS (two to five years from the time of diagnosis), but is holding down a nine-to-five job, running a thriving YouTube channel, and even finding time for a spot of acting and modelling.

She busies herself with the camera again: “I wish I could figure out how to rig this. Okay I rigged it. Perfect,” She breathes a sigh of relief. “I feel so much better now.”

She has come a long way since the Miami travel vlog. With titles like Things Not to Say to Someone in a Wheelchair and Top 5 Benefits of Being a Wheelchair User, her videos amass thousands of hits from disabled and able-bodied audiences alike. She recently collaborated with blind American radio presenter and film critic Tommy Edison in his YouTube series Blind vs. Blindfolded – the task at hand: name that sound.

She says YouTube has been one of the “most interesting and coolest life journeys” so far. “And I’ve had many different kinds of life journeys.”

For Lolo, making the move from her hometown of Stockton, Northern California (“a real small, low-key ass city”) to Los Angeles, Southern California – six hours away from the family she grew up with – was huge. “Moving out here and living on my own, navigating life – that’s one of its own journeys – navigating LA as a person with a disability, getting employment.”

Two years ago her prior diagnosis of ALS was overturned. Having reached her late twenties still exhibiting only minor symptoms of the disease, she knew her case was atypical. But it was after watching the hit Fox series Empire – the plotline of which includes a misdiagnosis of ALS – that she decided to look into a rediagnosis. Two years and many tests later, she’s officially (drumroll)… Undiagnosed. She says it’s a good thing, though, and her path towards a new – and, she hopes, better – diagnosis, is all to be documented on her channel.

When we speak, she hasn’t made a video in a while because she’s been busy moving into her new place and getting a new hair do – both things she can’t wait to show off on YouTube.

I tell her I love her new hair, and she’s clearly excited: “Oh yes, okay, so let me tell you about the hair thing, right – because that’s another journey in itself.” She changes her hair constantly, and wants this most recent transformation to be a surprise to her viewers. “I did a cool photo shoot and I’m gonna drop this fashion video. I want it to be a whole reveal thing.” She eyes me conspiratorially: “So this right here is between you and me.”

Her infectious bubbliness and positivity in her videos make for instant bingeability, even when the content is, at its essence, a rant in video form, as evidenced in Disability Pet Peeves and many more.

But her favourite topic to talk about is dating. It won’t be any surprise by now to learn that it’s the fun side of it she leans to. As she started to learn how to navigate the dating space as a person with a disability, she realised she needed to start sharing it. “We are just as open to dating and sexuality as any other person,” she says. “So why not talk about it all the time?! Plus – I’ve got a lot of success stories.”

In one video, she swoons as she counts down her top five crushes, starring Michael B. Jordan (“AKA Michael ‘Bae’ Jordan”) and Moonlight’s Trevante Rhodes (“That is chocolate in human form”). In another, a video review of a “pleasure cushion” (video title: Sex With Disabilities: More Cushion For The Pushin), she lifts the cushion up to the camera suggestively: “Let your mind wander, hunty” – (if you don’t know, google it) – “because yes.” She looks down at the velvet-covered cushion, “Yes, you can.”

She loves modelling, because of what it means in terms of representation: “Just knowing that I’m a person with a disability, and what that would mean on a screen. Especially being seen in a light that’s not so sad, and, you know so over the top. That means a lot to me.”

Envisaging the future of Sitting Pretty, Lolo is set on growth, but not for growth’s sake. “I want my channel to be the place where able-bodied people can come to learn,” she says. ”So that when they go out into the world and they come across a person with a disability, they know how to respond in a way that is human.” She clarifies: “Versus bullshit and acting scary and weird and stuff.”

Her dreams all focus on her followers and the impact she could make: “For parents to be able to come on my channel, and feel like my child can handle being an adult thanks to this girl. That’s the ultimate goal.”

Images Credit: Lorene Janae