My Disability Matters: Designing with disability in mind

Another version of this post is available on the Open Source Bridge wiki. It might work better for you if you are running into accessibility problems with Medium.

“I have been a blind disabled person for almost 30 years, since I was 17. I personally understand many, not all of course, of the struggles and discrimination that disabled people face. I seek to help empower disabled people and give them a voice. MDM provides a place for disabled people to find information, ask advice, network and debate issues around disability. They will find their community.”
- Dale Reardon, on mydisabilitymatters.club

Something I discussed in A potential tipping point is that even if most people aren’t ready to #DeleteFacebook, more and more are at a stage where they realize they’re not getting their needs met and looking for something better. Different people have different notions of what’s “better,” so we’re not likely to see a single one-size-fits-all solution take Facebook’s place. Instead, we’re likely to see more social networks which focus on communities that are currently being badly under-served in some ways by Facebook.

Like the disability community, for example.

“Social media companies have been neglecting the needs of their disabled users for too long” — the UK Parliament’s special report on Online abuse and the experience of disabled people

Of course, for many disabled people*, Facebook has a lot of value: it’s how they connect to people they know. And to their credit, Facebook has also made some significant improvements in accessibility over the years — Megan Rose Dickey has a good overview from earlier this year in Facebook’s Accessibility Ambitions.

But …

  • The harassment on Facebook can be vicious, especially for people who are typically marginalized by society. The UK Parliamentary inquiry was in response to a petition by Katie Price after horrific abuse of her son Harvey, who has multiple disabilities — a situation that’s all too common, and one Facebook typically ignores.
  • Loneliness is a huge problem for many disabled people, so they’re also interested in meeting people outside their current network. That’s not Facebook’s strength.
  • Facebook’s privacy-invasive policies, problematic defaults, and hard-to-navigate and constantly-changing privacy settings are a huge problem. As Carmit-Noa Shpigelman and Carol J. Gill point out in Facebook Use by Persons with Disabilities that Facebook’s problematic privacy defaults “could harm persons with disabilities, especially intellectual or learning disabilities, who might not know how to … limit the access to their personal information”

On the other hand, many of the Facebook alternatives I mentioned in A potential tipping point also aren’t great for many disabled people. On Mastodon, for example, @Cassian’s recent informal survey found that “people who are disabled are much less likely to feel able to contribute to development, and more likely to feel isolated.” So there’s certainly an under-served audience here — and one that’s a lot larger than many people realize: roughly 20% of people in the US have a disability, and that’s not even counting family, friends, and caregivers.

A screenshot of the MDM interface

My Disability Matters (MDM) is an empowering and safe online community for those impacted by disability to meet new friends, share experiences, learn and discuss. It’s still small, with just a few thousand users, but clearly has a lot of potential. The current version is a classic “Minimum Viable Product”, with just the minimal functionality that people need, things like photo sharing, groups 1–1 messages, and screen reader support.

To me (as somebody who thanks to glasses has relatively good eyesight), MDM’s interface looks similar to a lot of other small social networks: kind of like Facebook, albeit less flashy, adequate but not exceptional.

Unlike many other small social networks, though, MDM also works well with screen readers. For people who rely on assistive technology, “adequate” is way above the bar they experience in most places.**

Even though there solid best practices for making web software accessible to people who use screen readers or other accessibility technology, they’re not taught in most university programs or coding boot camps, and most companies don’t actually practice them.*** In other words, many software projects treat disabled people as an afterthought — which, quite frankly, sucks.

A lot of startups don’t think about accessibility up front. MDM does, obviously takes a different approach, and one way this shows up is their choice of software platform. A lot of techies in Silicon Valley are somewhat dismissive of Wordpress-based web sites, and it’s certainly true that they don’t look as sexy as a hand-crafted user interface using React or whatever the latest Javascript hotness is. But in a classic example of treating disabled people as an afterthought, React tutorials and sample projects almost completely ignore accessibility — so hand-crafted UIs lead to hotness for some, no access at all for others.

The Wordpress community, by contrast, has put a lot of work into making their software accessible. It’s far from perfect, but for somebody like Dale with a lot of Wordpress accessibility experience, it can be a very good platform. So by building on a reliable and highly scalable Wordpress platform, MDM is able to deliver basic functionality equally to everybody from the beginning.

 The My Disability Matters Respect Pledge. The MDM Club prioritises your safety. Bullies, trolls and scammers are not welcome and will be removed from the Club

Just as important as accessibility, though, is a focus on of creating a positive, safe, and respectful environment. MDM’s respect pledge sets the tone for the site:

By joining this community, and participating in any way, you commit to treat all fellow members of this community, regardless of race, religion, national origin, disability, sex, gender identity, sexual orientation or age, with respect, tolerance, empathy and without judgment or bias.

By contrast, networks like Twitter and Reddit didn’t pay attention to safety and respect up front — and as a result created toxic cultures that are now deeply entrenched. Facebook isn’t much better; their policies have some major problems, and the process is arbitrary and impersonal. Recently, in response to public pressure, the big companies are saying that they’ll improve things … then again, they’ve said it before, and haven’t made any progress.

Something I really want to highlight here is that keeping the disability perspective in mind leads to solutions that are better for lots of other people as well. It’s not just the disability community that cares about respect and tolerane; as I wrote in Lessons from Mastodon for Independent Social Networks, “an explicit anti-harassment focus will attract a lot of people who are tired of the normalized harassment on other social networks.” O.school CEO Andrea Barrica makes the business case for this in Ignoring Online Abuse is Bad for Business. Let’s Build Safer Spaces.****

MDM’s approach here is also a good example of the importance of setting intention, something Tammarrian Rogers and I talked about in Supporting diversity with a new approach to software. You can find lots of other examples of this approach (including various codes of conduct) on the Open Source Bridge wiki.

A few final thoughts

There’s a lot to learn from MDM for anybody building social software. Sure, with their focus and Dale’s background, it’s obvious that they need to keep disability perspectives in mind. But if you think about it, it’s just as important for any social software that doesn’t want to exclude disabled people or treat them as afterthoughts.

From a software engineering perspective, MDM treats accessibility as just as important a consideration as other priorities like functionality, scalability, and security. There are major advantages to taking this approach up front — making your software more testable, for example, and minimizing the amount of “technical debt” you’re accumulating. From a community perspective, it’s the only way to ensure that disabled people can get involved as equals from the very beginning.

Very few software projects approach it that way. So it’s potentially a huge competitive advantage for those who do.

MDM also embodies one of the principles of the disability rights movement: Nothing About Us Without Us. It’s software that’s built by people from the disability community for the disability community. That’s a good thing from the software engineering perspective: people who have first-hand lived experience with a community’s challenges are more likely to create solutions that actually work in practice. And it’s also important from a strategic perspective, because it means that from the very beginning, the jobs, skills, and opportunities that are getting created are helping to empower the community.

Like I said earlier, My Disability Matters is still at an early stage. Building a successful social network is hard. Funding makes it easier, of course; but historically investors have tended to underestimate the size and value of pretty much any audience other than affluent able-bodied white people. [How many disability-focused startups can you name off the top of your head?] More positively, though, MDM’s solving a real problem — one that Facebook is ignoring — for a suprisingly large market; and Dale’s already shown he can deliver enough functionality to get things going.

So I’m looking forward to seeing where things go from here!

You can check out My Disability Matters for yourself at mydisabilitymatters.club


* see s.e. smith’s Why I Say ‘Disabled Person’ Instead of ‘Person With Disabilities’ for why I personally tend to use identity-first language.

** of course there are exceptions. Dreamwidth, for example, has consistently prioritized accessibility.

*** the Open Source Bridge wiki has a long list of links, originally compiled by Tammarrian Rogers and me in 2016 for our talk on Supporting Diversity with a New Approach to Software. If you’ve got other suggestions, please let me know!

**** Disclosure: I’m O.school’s Tech DIVA. And once again, Dreamwidth is an excellent role model here, in multiple ways: their Diversity Statement; functionality like support for group-specific community guidelines, rich (and accessible!) moderation and privacy controls, and theming support; and their 10-year record of success as an inclusive social network.


Originally published at A Change Is Coming. Thanks to Dale Reardon for feedback on earlier versions!