How we came to build this site, and, generally, its point.
Stuart is quadriplegic; he can’t use his arms and legs at all; he can move his head and has about 5mm of reliable control in his right middle finger, and he has severe, complex, and degenerating health issues. This is far from the most interesting thing about him, but it’s important to grasp the extent to which he must “act at a distance” by designing systems and processes to carry out the business of daily living without physical contact. Imagine a house with no light switches, no door handles, no buttons on the phone or taps on the sink or knobs on the boiler. How would you make it work? It’s an invigorating challenge.
We are very lucky to have brilliant healthcare support now, but we spent 2002-2011 living in poverty with no help as Stuart slowly (and at the time inexplicably) lost all function in his body. So we had to figure stuff out on our own, and often on a shoestring, and perhaps you’re in that situation too.
In 2015 Stuart gave a talk at the Wuthering Bytes conference about the smart home we’d built and moved in to the year before. This article is adapted from the talk we wrote for that event, a transcript of which can be found on Robots and Cake and a video of which is embedded at the end of this article.
We’ll cover most of the topics mentioned in this article in their own, detailed articles as Inventability grows, but we thought it might be helpful to see the genesis of this site, which we really properly decided to launch after the response to the Wuthering Bytes talk, which was very positive! We will put up all the knowledge and resources we have amassed over the past 15 years, all the hundreds of crackpot inventions, hacks, tips and tricks we’ve built up along the way, and we hope at least something will help someone out.
The Control Prog
The accessibility product is not itself accessible.
I’m Stuart Turner and I mostly do work with autonomous drones, and work on interface development and software testing for quadriplegic accessibility. It seems I have this natural talent for the work: look ma, no hands! :P
But today I’m talking about smart homes because, collaborating with the NHS, Calderdale Accessible Homes, and Brocklyn Designs in Todmorden, I built one, and it’s brilliant. It was recently featured in the Sunday Times Homes and Gardens (paywall, sorry). How posh is that?
Now, let’s be clear: my smart home is smart for me. I don’t think everyone should have one exactly like mine. But I do think that the design principles we used can be applied by everybody to build their own smart home.
So let me just tell you a quick story about some assistive technology that was applied to me and how that experience helped me to develop this different approach.
So a few years ago I was referred into this mysterious system called NHS Assistive Technology. I had to steer an application through panels convened to approve the funding - and we are talking thousands of pounds here! I didn’t know what I was applying for - just vague equipment that was billed to help me - and the only thing I knew was that I really needed some help. So I filled in the forms and sat through the meetings and, some twenty two months later, two years of my life, an engineer arrived to fit the technology. It was called the control prog.
And it was a big, clunky box with a massive red plastic button attached. It honestly looked like a prop from Blake’s 7. The engineer sat in my bedroom, with his back to me, and programmed in my allotted functions. With remote controlled plugs, I was told, I would be allowed to turn on a fan, turn on a lamp, and with a landline hookup I could make three phone calls - to my mum, my father-in-law, and 999.
It turned out that he’d programmed one of the numbers wrong so actually I could call 999, my father in law, and a ladies college in Oldham.
We became great friends! I’m selling the romcom script to Universal! (No.)
There was one other issue. Because of my limited mobility I can only press one button, and I was already using a button to control my laptop - I had rigged up this whole system over years as I lost function. I can’t move my hand to a second button. So - and nobody told me this - in order to use the control prog to turn on the lamp or call the ladies college, I would have to give up my computer. They wanted me to lie there all day, finger at the ready, for sunset so I could turn my own lamp on.
I’m a computer scientist.
When I said maybe this wasn’t a great use of my life, they were completely bewildered. So, I got on with it myself: I got a few ancient cables and, with a mate, coded up a software bridge so I could trigger the thing from my laptop. Perhaps I shouldn’t say this, because when I contacted the company, they forbade me to do it. So I can’t release the software I built to help anyone else. It’s proprietary. Ironically, it’s not accessible. The accessibility product is not itself accessible.
I couldn’t fix the wrong phone number because the technology was a black box. I wasn’t supposed to make any changes to the device. I didn’t own it. It wasn’t mine and it wasn’t, frankly, useful to me at all. It often seems like a lot of very well meant time and energy and money is spent in a kind of accessibility theatre, with tech as props, placed around me for effect.
This pattern was repeated over and over, but the control prog sticks in my mind because on the same day as this fabled device was installed, at great cost and herculean effort, the government sent out thousands and thousands of plugs that could be turned on and off with any remote control. They dropped through our letterbox the very same day. For free. An energy saving initiative!
You can buy them in the pound shop.
Disability technology is often disabled technology.
With the control prog, I could call three numbers at a cost of £1200. For £500 I could buy an iPhone and call anyone in the world.
Disability technology is often disabled technology.
So you can see why, when I got control of my own PHB NHS budget and I began to build my accessible smart home, I set out a few general principles for purchases.
- Use low-cost commercial off-the-shelf electronics
- Open Source products where possible, with a focus on looking for devkits and APIs
- Open design products that integrate with other technology and other brands, so I don’t get locked into somebody’s walled garden
- (Don’t be too dogmatic - disability products can be necessary for the “last mile”)
So let’s just go over this in a little more detail:
Low-cost commercial off-the-shelf electronics.
This is as much about pragmatism as ideology. We all know that funding for disabled people is unreliable and unpredictable. I have a great setup now with CHC, but I could lose that at any time and be left totally on my own again. I can’t count on support, no disabled person can. I don’t want to be left with equipment that I can’t afford to repair or replace. So I have to build the most robust system I can, NOW. And robust means expecting that parts will fail and that needs will change.
Products developed in an open market turn out to be cheaper, better, and do more than those developed in the doldrums of disability land. And there are just more products, more different types of things, so it’s easier to construct the specialised, custom solutions that profound disability requires. Disability products tend to be low-tech, single use, unconnectable, and expensive. The VAT “saving” is a red herring. We always try to find mainstream products and avoid the disability markup. Sometimes this is actually the same product!
For example, a gooseneck clamp sold by a leading disability supplier for £72 as a wheelchair mount is on Amazon for £16.99 as a camera mount. It’s the exact same product. Dig a little deeper and you find generic goosenecks that could do the same job for £2. We have a ton of examples of this. This happens all the time. We could write fifty posts on this.
Look for situations where able bodied people would be without the use of their hands
Look for situations where able bodied people would be without the use of their hands and you will find a wealth of CHEAP assistive tech. Extreme sports, driving… in-car holders for phones are a few quid compared to hundreds of pounds if they’re marketed as wheelchair attachments. Sally just made me a coffee holder for my chin-controller by wrapping BMX grip tape around the gantry and clipping on a Bookman Clamp - a hipster coffee cup holder - and putting in a Keepcup - just a reusable latte cup. It’s all cheap and easily available in bike shops or amazon or where ever. More money, but another thing to think of is things like buying mountaineering jackets for coats - they have articulated arms for climbing postures (arms above head) so they’re much easier to put on if you have to be dressed by another person.
Thinking back to those energy saving remote controlled plugs, they weren’t sold as “disability technology” - they were just labour saving devices, things that make manual jobs easier for everyone. People are actually quite good at inventing tools and tech that save steps and work and make our lives easier –it’s almost like the idea of disability technology itself is a block that impedes our thinking.
Going back to the control prog. I’m just going to talk in a little bit of detail about one smart product I have that is really common: my lightbulbs. There are lots of smart bulbs on the market now, but I went with LIFX because they are open source and hackable. They don’t need an engineer to fit them. They don’t even need a hub like the Philips Hue - you just screw them into your light fitting like any other bulb and they join your normal wifi. When I first got them - I got them on Kickstarter - they were pretty rudimentary. The first app was fixed sideways on my iPad and obviously I can’t turn the iPad round. So I couldn’t use the app.
My lights wake me up in the morning with a sunrise programme. They start my melatonin production off in the evening with a long red sunset, and in the night when I have to get up (every 2 hours), they stay red so I don’t wake up too much. They flash different colours when I need to take meds or on recycling day. I could hook them up to my phone’s location data so that when I left the house, the lights turn off. There are thousands of recipes online that I can add to my system, and I can make my own up too. Thinking about that control prog and that software bridge, with an open system like LIFX I could have shared my solution with everyone that needed it, for free.
OK, I’m a geek and I live with this crackpot inventor who our friends literally call Batman, so I’ve got an edge. Not everyone can do this themselves - they need support from experts. But the experts should be experts in adaptation, in hackability, not in going to disability fairs and only buying these high cost low competition niche products. And they should always look for products that can be modified and the mods shared. We need to be allowed to collaborate. Otherwise every disabled person has to start from zero. Living with quadriplegia is already an escapology trick. You start in a room with your arms and legs tied to a bed. When you call for help, a paper form is posted through the door. It lies on the floor gathering dust. How do you get out? This is like dropping each 18 year old in a cave and asking them to build their own house, road, car, and even invent their own job before they start work the next morning.
This is all part of…
Normal people won’t buy a telly that can’t be plugged into their Skybox. They won’t buy a car that can’t be used in the rain. Mainstream companies that try this stuff go bust, even though disability companies do this kind of thing all the time.
So I try not to get locked into one brand of product or one way of doing things. My smart plugs are WEMO and my smart bulbs are LiFX. My smoke alarms are Nest and my heating system is Heatmiser. The only thing they all have in common is that they all have ways to connect to each other in this vast Internet of Things. They are hookable and hackable. If one of these companies goes bust, my whole house won’t go out of order overnight. If my lightbulbs break down, it will be dark, but I won’t freeze to death too.
It’s important to note as well that this is really a lot cheaper. A LOT. I was quoted around ten thousand pounds to have a Control 4 lighting system. I spent around six hundred pounds on mine.
Designing openly isn’t just about making sure everything works together, it’s about leaving a space for things to change. It’s about being adaptable. It’s about wiggle room. Adaptable is accessible, because you can change things to make them work for you.
I could only get funding to automate one door, my front door, so if someone shuts my office door without thinking, I can’t go to work until they come back. But because we left the design open to being automated - we put in sliding doors and ran electrics to them when we did the wiring - when I can get the cash this will be a simple problem to solve.
I used to have a normal desk, and I spent a lot of time trying to figure out how to get the wheelchair under it and how to see the screen, but eventually I realised that I don’t need a desk at all. I don’t use a keyboard anyway. So now I use Ergotron mounts that are articulated. I can reposition them over and over, so I can see them whatever position my wheelchair is in. I can work lying down if I need to. And sometimes I do need to.
Does it matter that I can’t do things in the usual way?
Thinking about that desk that I couldn’t fit under. I think it’s easy to get stuck solving the wrong problem. Does it matter that I can’t do things in the usual way? I don’t think so! I think that confuses the method with the goal, confuses the way you do things with what you want to accomplish. A lot of adaptations are about “pushing the button”, about, conceptually, replacing the hands I can’t use.
But you know that saying, when all you have is a hammer, everything looks like a nail? Well hands are good at turning knobs, dials, lightswitches… all tools made for hands! But they aren’t necessary for triggering processes. I don’t actually need to access the lightswitch. I can hook the lightbulb up to the sunset and it can sort itself out when it gets dark.
design an environment where the easier choice is the right choice
The key to all of this is pragmatism. I can’t emphasise how important pragmatism is. Because I’m disabled now, in this world. I can’t wait until we’ve fixed everything. I have to run two tracks - the long game of ideals - of changing minds and behaviours and, eventually, the world, and the reality of dealing with what may be a brief life filled with some pretty big challenges. I can’t wait around for everything to be perfect. I’ve got to design for the world that is, now, and, not to be too depressing, I’ve got to expect it to get worse. That’s the reality of a degenerative illness. So I need to be flexible. I need to be able to rapidly revise my systems. I can’t sit around for two years applying to be able to call 999.
The other reality is that, you know, other people aren’t perfect either! Changing behaviours is difficult and takes time. In the past year I’ve probably had 30 different care workers. It’s just not practical to hope that every single one practices good infection control. It’s pragmatic instead to design an environment where the easier choice is the right choice.
So we spent a lot of time on designing out tasks like cleaning, tidying, dusting. We referred to the great NHS site Spaces for Health a lot, which has disappeared now unfortunately. There’s too much really to cover in this article - we will detail everything skimmed over in this article in individual posts - but just briefly, things like: removing as many horizontal surfaces as possible - we don’t have side tables or coffee tables, or dado rails or cornicing even. There are no open shelves. Computers and books are in cabinets with doors. So dust can’t collect anywhere but the floor, where it’s easily hoovered, and carers are forced to put everything away after they’ve used them so everything stays organised and clean. There’s nowhere to put anything down. The easiest thing to do is to clean up after yourself, so they do.
We zoned areas so the clinical waste is next to the carer stock cupboard, the handtowel is always on its own hook by each sink, the handwash is always by the tap. We made sure every tap, handle, doorknob, lightswitch was unlaquered brass. –We just got normal cheap lacquered brass from World O’ Brass* and took the lacquer off with nail polish remover. Brass, as a copper alloy, is naturally bactericidal so it’s a really cheap infection control intervention. And it’s a one time cost. It doesn’t wear out.
The walls are painted in Steracryl silver ion paint, and even the ceilings are boarded with Greenline, which absorbs volatile organic compounds. At every point in the build, Brocklyn Designs considered if they could make a material do double duty. So the silicone sealant is antibacterial. The tile grouting is protein resistant. But more than this, they used floor to ceiling dolphin panels in the wetroom, so there’s almost no grout at all, and fewer grooves for mould to grow. And Calderdale Accessible Homes, who issued the Disabled Facilities Grant and consulted throughout, were ambitious and open minded enough to allow me, and Brocklyn Designs, to actually implement these unconventional ideas, for which I am forever grateful.
One final part of pragmatism is also not getting locked into your own rules. I believe in low cost, mainstream, open source products, but I can’t afford to be dogmatic about that, either! Because every so often, there’s a product that you can’t do without and that isn’t sold as a mainstream product because it objectively makes your user experience worse - unless it’s exactly the thing that you need. No one should swap out their wheelchair for a deck chair hacked with bicycle wheels.
The last mile of connecting to mainstream technology often has to be a piece of disabled-specific technology. I can control my laptop and write code and use APIs because I have the Buddy Button, a binary switch input that I can press with my 5 millimetres of conscious control on my one finger. That’s a solid product. I could do without it, but I certainly don’t wish to.
I’ll leave you with this: we built our smart home on the principles of using interoperable, mainstream, cheap, hackable, flexible products that make life easier not just for me - but for everyone. These principles ensure that I can live in an ecosystem where people and devices work together, and the easiest thing is the right thing to do. Good design has these principles anyway - people talk about interfaces being intuitive, design changing behavior and directing flow. Good design shouldn’t consider the disabled person as apart from everything and everyone else, but should be INTEGRATIVE of people, tools, and technology - this is how technology can bring people back into the world. And this is how I’m talking to you right now.