Skip to content

Wheelchair Build Project Post 2 – Inspiration and Research

So, I’ve decided I want to build my own custom wheelchair. There are advantages to starting from scratch, but the path I’m choosing is to take advantage of the engineering work of others, and to use as many off-the-shelf parts as possible. Hopefully this will mean that the overall cost is lower, and also hopefully the project will be quicker

A friend recommended that I contact Get Cycling in York, as they are committed to helping disabled people get mobile, they use a lot of bicycle parts, and they can make custom frames

In my last post, I talked about how the inspiration for this project came partly from the superb Leveraged Freedom Chair, which was designed by engineers from MIT to meet specific needs in the developing world. Obviously my setting and needs are different. Most notably, I need my mobility device to be able to operate using a motor, as my primary diagnosis is Systemic Exertion Intolerance Disease (SEID), otherwise known as Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis. I have this many-named but ill-understood condition badly enough that walking to the loo can sometimes require a 5 minute wait before I’m ready to walk less than 10 metres back to bed. So, while being able to operate a wheelchair manually in close quarters and when doing fine positioning will undoubtedly be invaluable, for most of the time, I need to rely on a motor to get around

Sitting in our garage, sadly neglected and never used to her full potential, is an electric bike I bought 5 years ago. At that point I was starting to find longer distances difficult, but was still resisting getting myself a walking stick. The electric bike, for the period before I got too ill for it, was a lifeline. I could ride into town or out to the peaks, and use the motor to go far further than I would have been able to ride or walk without it. I know that in the grand scheme of things, I never cycled very long distances. As someone whose world had been steadily shrinking for years, and who was starting to have to use a walking stick however, it was indescribable. I’m sure that having the bike, and using it for the time that I could, greatly eased the emotional trauma of being a former outdoor sports enthusiast now reliant on mobility aids

Being as I am, a bit of a social media addict, I have Pinterest. And being a user of Pinterest, when I find something I like, I tend to Pin it, and then find other stuff that broadly relates to it. And with my electric bike having made such a difference to my life, I have a lot of Pins related to bikes

One of the things I’ve found in my Pinterest wanderings is that there are off-the-shelf kits to convert standard bicycles to tricycles. Looking at these kits. And the structure of the Leveraged Freedom Chair. And the electric motor from the bike I can no longer ride. There simply must be a way to put things together that meets all the items on my brief

I’ve had a lot of ideas about how to do the details of things, but I’m trying to just make note of them for the time being. To not become invested in any particular solution, because you never know until you actually try things which ideas are going to work

My next step is going to be to make some calls. And Get Cycling are at the top of my list! I’ll let you know how I get on

Advertisements

Wheelchair Build Project: Post 1

In the last couple of months, the mobility scooter I rely on to get around out of the house has started to fail in a major way. This week it was serviced, and I can get some new batteries which will make it last a little longer, maybe as much as a year. 

Having had the scooter for 2 years, I’ve known for a while that it’s not really the best mobility device for me. Long term, I need something that can do a couple more things than the scooter can, and definitely something that will last longer. 

Knowing that my current device has a ticking clock, naturally I started to look around, to see what my options could be to buy something. 

I have been bitterly disappointed. The options out there for mobility devices are either crap, or astronomically expensive, but most often both. There are a couple of things that I could theoretically cobble together to make a system that might work for me, but it would be for two devices, both shipping internationally, with no local shops or support if something goes wrong. Oh yes, and a minimum up front investment of £6,000. 

Even then, whatever device or combination of devices I look at, none of them will do all of the things I want them to do in one. Each of them will be appropriate for maybe 95% of the situations where I need a mobility aid, but I’d need something else for the other 5%. Which might be fine if I drove everywhere and could keep my backup mobility device(s) in my car, but I’m medically forbidden to drive, and use a lot of public transport. 

While looking around, I came across something called the Leveraged Freedom Chair, and it’s relative, the GRIT Freedom Chair. These wheelchairs meet a whole load of my criteria. They’re maneuverable. They’re robust. They’re easy to fix and thus likely to last a long time. 

But the leveraged freedom chair isn’t available in the UK, the GRIT chair sells from the US making shipping alone almost £600, oh yes, and neither of them has a power option, which is necessary for me.

Yet, when I look at electric wheelchairs, I come up against the other end of the spectrum. They’re also expensive. Often ugly. Very bulky. And they’re not really possible to maneuvre without specialist equipment. Which means that if I want to go anywhere, and I mean anywhere, I have to know ahead of time that there will be ramps or lifts for every single bit of the journey. Including in and out of vehicles. Which means I will never be able to just catch a lift somewhere. One of my partners has a car, and it’s entirely unsuitable for carrying a 95kg electric wheelchair or having a ramp fitted. My other partner who drives just hires a car when he needs one – and I don’t even know how you start getting a ramped, accessible, hire vehicle. Therefore an electric wheelchair is also out. 

Before I got as ill and disabled as I am now, I enjoyed cycling a lot. I cycled all over North London when I was a kid, and a few years ago, I got myself an electric bike to help my already-a-little-bit-ill self to get up and down Sheffield’s hills and out into the Peaks. 

All of which has led me to believe that it just has to be possible to combine the power of an e-bike, the innovation of manual lever drives, and the building ethos of using primarily off-the-shelf bicycle parts to create a wheelchair that will work for me. For the long term. In all the situations I need it.

I’ve been thinking this over for the past few days, and I’m brimming with ideas. But as any designer or engineer knows, the place you have to start is the brief. So here are the outlines I need to fill in.

BRIEF FOR CHARLIE’S WHEELCHAIR

  1. Capable of both manual and powered operation
  2. Can be folded and / or dismantled enough to fit into a car boot – specifically, the boot of my partner’s car
  3. Easy to use on public transport, that is, maneuverable, and copes well with sloped ramps in a timely manner
  4. Uses as many off the shelf bike and ebike parts as possible, with a minimum of custom parts, aiming for a total cost under £1,000
  5. Fits at a table or under a desk
  6. Legal to use on the pavement in the UK
  7. Easy to modify and repair

I’m going to document the whole design and build process on here, including my mistakes. Because I have another aim as well. I would like, once I have made my wheelchair, to be able to produce, well, a recipe if not an exact plan, for how to make one of these for yourself if you want. 

Mobility devices are expensive, and are only designed to last five years. Usually, when they stop working or fail, you then have to scrap the whole thing and start from scratch. These costs, and the limitations if you can’t afford them, are distinctly political. 

In the absence of being able to change the world, cure illness and disability, and render humanity from the sickness of capitalism, I’m going to try and make an affordable, upgradeable, open source wheelchair, capable of modification. And tell you how to make one too.

Fenty Beauty and Black Beauty

I know, I’m a white woman writing about beauty products for black people. I know. I promise, I’m already self-flagellating.

But I noticed a thing.

I’m a bit of a beauty YouTube enthusiast. One of the people I follow is Jackie Aina. She’s brilliant. I also jump around to a whole load of different channels. And there was a real divide on opinions about Rihanna’s Fenty Beauty launch.

The reaction of beauty vloggers seems to be divided along racial lines. Now, that’s nothing new, but on this occasion, white vloggers seem to be enjoying an average sort of launch, with upsides and downsides, like any other line. WOC however, appear to be all over this, and seeing the launch as really revolutionary.

Here is Jackie Aina’s review of the launch. Jackie has been an advocate of make up for darker skin tones for years. If you’re looking for make up advice and recommendations for darker skin tones, this woman is amazing. Also, a while back, she led a tutorial challenge for beauty vloggers to do complete make up looks using only products from black owned make up brands. So, if you want to make a difference with your money and support black owned makeup brands, check out the BOMB tag on YouTube

Here’s a review from Nyma Tang’s series, The Darkest Shade, in which she tests the often neglected dark end of the foundation spectrum

And here, with a British WOC perspective is Patricia Bright, who ended up with a look quite different from her regular make up, but one she really enjoyed making

So yeah. I watched all of these videos, and it reminded me of something I saw the other day via tumblr. This article on MIC describes the steps that cinematographer Ava Berkofsky and the rest of the creative staff on the HBO show Insecure have taken to ensure that the skin and features of their black actors show up on film, even in low light and evening settings.

The reflective qualities of the make up Berkofsky describes, and the glowing natural looks the YouTubers describe seem very similar. Which probably explains the difference between the white and WOC reactions to this launch. Because Fenty Beauty is not designed for white skin. It’ll work okay. It’s not bad. It’s a good high end line. But it’s not designed for a white canvas. That’s not who it’s for. It’s designed to work differently, and to do different things for the skin and features.

Personally, I’ve looked at the line, and it looks amazing. The match sticks look awesome, and I might get myself some of the blotting paper, because that container is fucking genius. But I can’t see myself using too much of it. Because it’s not designed for me.

What the blood knows – terrorism and collective memory

From a UK perspective, there’s so much about the USA that is strange. But their response to terrorists has to be the strangest. I mean, this weekend wasn’t even their terrorist incident, and so many of them are going a bit funny about it

Maybe it’s because of the blood

In Europe, our ground is soaked in blood. The blood of animals, enemies, sacrifices and ancestors. Our histories are shared through families and communities and lessons, as far as the beginning of the written word. And beyond

The USA has that too, but only for those whose ancestry stretches back over 600 years is it their animals, their ancestors. From a British perspective, that’s a while, but not, in the grand scheme of things, a very long time. For example, the legal system of England and Wales is based on Magna Carta, which was signed in 1215, and has never been suspended, although it has been, bit by bit, repealed and superceded. The Roman baths in Bath, in the southwest of England, are still usable buildings

So for modern America, for its collective child-of-immigrants identity, it’s memories are comparatively short and bloodless. And the blood there is, is either not theirs, it was shed overseas. Their civil war is the only exception. Until 9/11, when the spectre of a shared enemy attacking at home became reality for Americans for the first time. A horror their forbears thought they’d paid to get rid of through storms and disease on the high Atlantic

This youthfulness of collective experience has undeniable upsides. The USA has been the top world economy for a very long time, and despite challenges will stay there a good while yet. The collective energy, positivity, and confidence of America is honestly somewhat baffling at times. But every balance sheet has two sides

On the old continent, we are used to people spilling our blood at home to try and make us think and act differently. Sometimes it works. Sometimes it doesn’t. Mostly it makes us stick up two fingers at anyone who thinks they can tell us what to do and call them fucking wankers

This is not our first time in the crosshairs. It will not be the last. Our blood knows it, backwards and forwards. So we bury our dead. We cry tears and defiance. And we get on with our lives, knowing delay is possible, but prevention an illusion

Freedom is for the rich

I’m sure a lot of people have talked about this tweet by Paul Ryan from last week:

@PRyan: Freedom is the ability to buy what you want to fit what you need. Obamacare is Washington telling you what to buy regardless of your needs. 

And I’m just so angry about it. I’ve tried to calm myself down. To comfort myself that there are lots of people saying how fucked up this is. But fundamentally, this is so violent. I can’t say nothing. 

Because there is so much of this shit all over the place. It’s everywhere. The other day I saw a tweet about how good health savings accounts are, because you get to pay for healthcare with your own money! 

And honestly, this is at its heart a problem of language. Because people in power keep using the word ‘freedom’, and making me feel like Inigo Montoya when he told Vizzini, “You keep using that word. I do not think it means what you think it means.”

Because for me, paying for my healthcare with personal savings would not make me free. Obviously I have paid for healthcare because I live in the UK, and while I worked, I paid my National Insurance contributions like everyone else. I am hoping that in the future I will be able to work again, and pay more into the system.

However, my ability to work ever again depends in large part on the NHS, social care, benefit payments, NICE, clinical trials, medical research. In other words, government spending on ill people. My freedom comes from, and is dependant on, these things. Both now and in the future.

I take eight prescription medications on a daily basis, two more on an as needed basis, two suppliments, and a non-psychogenic cannabis extract, CBD. The combination of these things enable me to be awake enough of the day to maintain friendships and support networks through social media. To be out of bed up to four hours at a time. To be able to wash most of myself most of the time in our modified bathroom.

But without the NHS, without my disability benefits, I wouldn’t be able to afford these things. The kind of freedom encouraged by Paul Ryan, the definition of freedom that lurks behind talk of healthcare ‘choice’ in the UK, would leave me locked in my house, in my room, in my bed, in a body on fire with pain from faulty nerves, in a mind without the energy to combat the disassociation and derealisation that often develop and accompany severe chronic pain.

Choice looks very different for someone in a healthy body, a car, and enough money to afford more than one option. 

For me, all this talk of choice in services upon which my life depends is just terrifying. Because, yes, technically all the services may be available. Technically, it is possible to get X therapy or Y medication. If you can afford it. What if you can’t?

There is currently a large, double blind study going on in Norway on a medication which may be able to cure my primary diagnosis of CFS/ME/SEID. Just cure it. Done! If it works, I could take it and be healthy again! I’m only 33, so it’s not inconceivable that I could be working again before I hit 40. Given that retirement ages are heading toward 70, that would be another 30 years of working, paying into the insurance system I’m currently using.

But what if that insurance system no longer exists?

If the national insurance system in the UK is abolished, then should this treatment become available, do I just get it, or am I ‘free’ to pay for it if I can? How do I pay for it if my national insurance stops paying out disability benefits? 

For me, and for very many other people, a financial choice is not a choice. As a household, we celebrated the day that we were finally able to choose a clean electricity supplier. Being able to choose anything but the cheapest option is, for many people, not an option.

That treatment I mentioned above? It’s chemo. They discovered it’s effect on SEID by accident when treating cancer patients who also had SEID. It works by wiping out the immune system so you have to start from scratch. It’s a serious, intensive treatment. For cancer and arthritis, which are two of the current uses of this medication, it can make you feel worse for up to 4 months after treatment. And even if it works, SEID often results in something called deconditioning. It has for me. Reversing deconditioning requires extensive sustained physical therapy. For me, going through this treatment and the recovery could take over a year, but result in being able to do a full day’s normal activity for over 30 earning, tax paying years.

But, if healthcare in the UK changes from a single payer system, there’s a high possibility of me being screwed. My SEID is a pre-existing condition, and if this turns out to be the treatment, it won’t be cheap. There is a high possibility that if healthcare in the UK becomes a marketplace, I will not be able to afford the insurance necessary to become healthy. And there’s no way that, for me, that is freedom.

You Have Been Loved

It is difficult to describe how sheltered and isolated my life was before I moved away from home. I think it is even harder for others to truly understand. I don’t have to wonder how a time traveller from the 1950s would feel, arriving in the present day – I made that journey myself at the age of 18. 

This works itself out in myriad ways. For example, I was 16 before I understood why a couple on honeymoon might rather share a tent than use two waterproof sleeping bags, even when on a cycling holiday, when all weight was under scrutiny. 

A big cultural touchstone for this feeling of dislocation is music. 

This is particularly true because of how important music has always been for me. I could sing in tune before I was 3. My voice got me on the stage of the National Theatre when I was 7, when the minimum age for performers was 8. I started learning to read score when I was 5, and joined the church choir shortly after that. I’ve performed in the Festival and Albert Halls, and have no idea how many concerts and recitals I’ve attended. All through secondary school, I did extra music school on Saturday mornings. I did music GCSE and A Level. I hold instrument grades for three instruments, and have a grade 8 singing with distinction. 

All that though – all of it – is only relevant for white music. Classical, orchestral, church, and even if composed within the last 100 years, no electric guitars, and it has percussion, not drums. You know what I mean. My first CD was Mozart for fuck’s sake. 

Turns out it’s totally possible to get culture shock in your own country. I vividly remember hearing Dark Side Of The Moon for the first time when I was 17. It was a revelation of a whole new world of musical possibilities. I was drunk on that one listen (I didn’t have a copy) for a week. 

The radio was a window into a different world. A very small one. With thick, dirty glass. George Michael made it some way through the window. When his compilation album Ladies and Gentlemen came out, I listened to it over and over and over. 

I skipped the one with Elton John though, because he was Gay, and that was Evil. Like murder. And touching your genitals. And too many bells during Communion. I don’t know how I missed, like, the whole of 1998. As I said, it’s so hard to describe to someone who wasn’t there just how far under the rock I was raised. 

When I left home, Ladies and Gentlemen came with me, and I spent most of 2003 with unmonitored access to the world for the first time. I was no longer scheduled every day from 7am to 10pm. I had the internet. On my own computer. My phone bills were astronomical. 

I discovered that most people didn’t even realise there could be bells during Communion, let alone care about how many there were. I explored new music as far as my meagre salary and crappy 2003 dial up internet would let me. 

I found out George Michael was gay, and somehow couldn’t make the mental switch to thinking of him as Evil. I kissed lots of boys, fucked many of them, and it didn’t feel Evil either. I kissed some girls. I wondered if maybe I might be a bit gay too, and worried that maybe I was Evil. 

All of which is a round-about way of saying that, for baby queer me, who wasn’t even sure what queer was yet, George Michael was really important. That he was gay was really important. He was one of the first cracks in the queer-people-are-evil-and-also-to-be-pitied wall that my parents had built in my mind. The start of thinking that maybe the Church might not be the only arbiter of how to live. 

George Michael was a slut. He worked out his sexuality by having sex with people. He was non-monogamous. He didn’t apologise for any of it. In retrospect, he was a pretty much perfect example for baby queer me. 

So, goodbye George. Thank you for the music. And thank you for everything else too. These tears are for you. 

Assumptions about people’s pants

We’re all supposed to live in our own little echo chambers these days, so when I posted this tweet yesterday, I really wasn’t expecting it to be at all controversial.

 

Of course, it didn’t get controversial on twitter, because my twitter is a well crafted garden of superb people. It got weird on facebook, where I cross posted.

I mean, to my mind, there’s not really anything controversial here. It is creepy to make assumptions about other people’s junk. Given that we live in the world of the ‘trans panic’ murder defence, maybe that was a little optimistic, but as I said, I was posting in my echo chamber. I was expecting lols.

So, for the avoidance of doubt, here are some things that are and are not creepy:

NOT CREEPY

  • Liking to look at pretty ladies
  • Liking to look at handsome gentlemen
  • Only wanting to have sex with people who identify as women and have a vagina
  • Only wanting to have sex with people who identify as men and have a penis
  • Being in one of the above two groups, finding out that your hot date doesn’t fit into the category you find attractive, and saying, ‘I’m afraid I’m not attracted to your body now that I know that. I’m so sorry. This sucks.’

CREEPY

  • Asking people about their genitals before it becomes relevant
  • Putting the genital configuration(s) you find attractive on your dating profile
  • Reacting with anger when someone discloses their genital configuration and you discover that it’s different to what you assumed
  • Saying that someone who is dating a trans person cannot be monosexual because of their partner’s genital configuration and that if they say so they are lying
  • Generally in any way making or acting on the assumption that a person’s gender presentation or gender identity must necessarily require a particular topography in their pants

I mean. I don’t think it’s that hard. Just don’t be a dick about whether or not someone has a dick.