Screening out diversity & innovation?

New technologies are evolving that pull in divergent directions: Testing & Screening pulling in one direction and inclusive technologies in another – this dichotomy poses ethical questions that we should consider.

Screening

Recent advances in medical science mean that it is now easier than ever to predict the likelihood of medical conditions companies like 23&me offer direct to consumer screening which can highlight the probability of certain genetically determined conditions.

Other screening tests are also available via medical professionals that cover a range of different conditions such as searching for the BRCA gene for breast cancer, prenatal testing for downs and spinabifida have existed for many years but either lacked accuracy or were invasive and had a risk of harm.

NIPT

NIPT (Non-invasive prenatal testing) is now able to forecast for Down’s syndrome with 99% accuracy. The reduced risk will surely increase the uptake of such screening.

Many people will see this as a desirable development; indeed newspapers in the UK hailed the introduction of the test as a victory for parents.

Advocates of NIPT say that screening is about informing parents and giving them choice. The reality is most women who are told that their foetus has tested positive for Down’s syndrome chose to terminate the pregnancy. If we look to Iceland where social provision for people with learning difficulties is very advanced and the prospects for a person with Down’s syndrome are good – 100% of women chose to terminate after a positive test for Down’s Syndrome.

It’s ironic that the number of terminations is on the increase just as advances in teaching and integration are enabling many people with Down’s syndrome to complete schooling and hold down jobs.

The Ethical Dilemma

We have moved from a time when people were institutionalised and denied education and the right to a normal life to a point where many people with Down’s can be fully integrated and productive members of society but despite these advances we face the real prospect that screenings will result in the disappearance of Down’s syndrome (also referred to as Trisomy 21), in a generation or so.

“To me people with Down’s syndrome are a type of person. It’s not a disease” Sally Phillips comedienne and the presenter of the BBC documentary “A World Without Down’s Syndrome”.

Only last week I attended a conference where Sara Ruh who has Trisomy 21 addressed an audience of 500 people talking about her outlook on life and work.

Sara & Debra At the Funka Conference - Sara's slide says don't underestimate me.

Picture by Eva Westerhoff

Whilst Down’s syndrome  is the most high profile condition to be screened there is a lot of research being undertaken looking to screen for neurological differences such as autism and dyslexia. Google has teamed up with Autism speaks to research into a cure for autism.

Many people who are not directly affected see these developments as a wholly good thing but we should consider carefully the ethical and societal questions.

There is much evidence that diversity enriches society, diverse teams produce better results & ideas. Diversity goes beyond embracing differences of nationality, gender and religious beliefs. Our concept of diversity needs to embrace both disability and also the concept of neurodiversity. I believe that unless we make the case for the benefits to society of embracing disability and neurodiversity we risk losing some of the most potentially creative members of our society.

Neurodiversity & Creativity

Neurodiversity is a term that has been coined to describe the fact that people have brains which are wired differently (neurodivergence) from neuro typical people (your average Joe if there is ever such a thing as your average Joe). It encompasses a variety of different conditions such as ADHD, dyspraxia, dyslexia, dyscalculia, autistic spectrum and Tourette’s amongst others.

Some of our brightest thinkers are and have been neurodivergent individuals. There is speculation that Einstein was dyslexic, some of our brightest entrepreneurs such as Steve Jobs and Richard Branson are or were dyslexic, and many technology companies are now competing with intelligence agencies to recruit people on the autistic spectrum because they are able to formulate ideas and see patterns that others are unable to.

Being wired differently has its advantages as well as the disadvantages that have for so long been treated as a disability:

The Make up of neurodiversity Created by Mary Colley - an overlapping diagram of difficulties / traits experienced by neurodivergent people with conditions such as Autistic Spectrum Conditions, ADHD, Dyslexia, DCD. Dyscalculia & tourettes.

New technologies are revolutionising how we communicate and consume data.

We now live in a time where technology has enabled us to ameliorate many of the difficulties faced by people with dyslexia.  I am dyslexic and I am dictating this article using speech recognition software, I also frequently use text-to-speech systems to help me with proofreading. Tools are now available which enable autistic people who are non-verbal to be able to communicate with complex vocabularies using symbols.

Previously many of these individuals were considered beyond help because they were not able to communicate; many were confined to institutions with no prospects of ever leaving. Now advocates for neurodiversity point out that it is merely a different method of communication that is required to access opportunities for these individuals. I work with a number of brilliant individuals who are autistic dyslexic and ADHD some of them are non-verbal some of the time and yet they make a fantastic contribution to the ongoing work in accessibility.

Only recently a fertility clinic in the UK decided to refuse sperm donations from people with dyslexia. They made the assumption that people would not want to have a child that was anything other than neuro typical, and yet we are in an age where the ability to read and write is less important than it was even 20 years ago, because technology can enable people to access information orally once more.  For most of human history knowledge was transferred orally and as we move towards conversational interfaces with computers and artificial intelligence becomes commonplace I see that the requirement for reading and writing skills will dwindle over time.

New technologies are evolving that pull in divergent directions Testing & Screening pulling in one direction and inclusive technologies in another.

Reading and writing once the preserve of the elite and then democratised through education has enabled great progress for mankind, it has helped spread knowledge and been the driving power behind many scientific discoveries. But now we are past that point where it is the only way of accessing such information. As text has been digitised it has been transformed into data which can be consumed in a multitude of different ways this flexibility has been the foundation stone for the levelling of the playing field for people who are neurodivergent. It enables people to communicate in the ways that they wish and feel comfortable with rather than those prescribed by society.

Moving on from neurodiversity to consider many other disabilities there are opportunities brought to us by technology that will enable us to augment ourselves as human beings and to find ways of overcoming nature’s shortcomings. For example advances in prosthetics and robotics mean that already we are in the process of demonstrating robotic hands that can feel, other examples are implants that can help restore sight or hearing are on the cusp of becoming commonplace. Exoskeletons can help people to walk who were once immobile. These are exciting times for people with disabilities as technology holds much promise for greater independence and opportunities.

Enabling informed choice

So if we are on the cusp of so many innovations that can significantly improve the lives of people with disabilities my view is that we should think long and hard before making the decision to effectively remove people like me from the collective gene pool.

We need to be making the case to train medical professionals especially those that are encouraging screening to have a clear view that disability is not necessarily tragedy. Of course tests will be invented and people will screen for illnesses and disabilities but if they are informed properly then they will be able to make a choice based upon all of the information about the quality of life that a person with a disability can expect in the 21st century, the contribution to society that they can make and not just fear that they will be a burden.

Accessibility Is Joyous

Let’s Celebrate Accessibility & Inclusion

It’s the 3rd Thursday in May so I am writing my ritual blog post for GAAD (Global Accessibility Awareness Day)

2016 Calendar with a red ring around may 19th

Mark Your Calendar For GAAD

It seems like every day is a Global this or International that day – indeed, often days have multiple causes assigned to them. It can be all to easy to switch off & carry on as normal and to be honest a lot of the time I think that we all do.

Why do I choose to celebrate GAAD?

Firstly I live and work in accessibility:

  • I’m immersed in it, I believe passionately that inclusion is good for both individuals and society. 
  • I use Assistive Technologies as well as supply them and I benefit from accessible products and features.
  • As I have blogged previously 1 billion people with disabilities is not a niche, it’s a demographic megatrend.

Secondly, GAAD is a community day it’s not designed to raise money the sole purpose is awareness. Jennison and Joe the founders have done a great job of energising the global accessibility community to get behind the day and share their knowledge and experience.

GAAD is paying it forwards

It’s about sharing skills and knowledge with new people, exposing the wider world to the work that is important to enable many people to participate fully in an increasingly digital world.

Thirdly and it’s a related point, that sometimes working in accessibility can be a bit of a lonely job. Many colleagues are the only person in their company in that role so GAAD is also a chance to come together and celebrate with friends and make new ones.

GAAD is a day when we can help demystify accessibility

As Gareth Ford Williams says “Accessibility is not a dark art” today is our chance to shine a light on and spread the love for accessibility.

Along with the Atos team of Accessibility Specialists and a bunch of amazing speakers we’ll be gathering at our HQ in London for an all day celebration. We’ll be sharing stories and knowledge both hands on and virtually.

For those that are interested, there will be a captioned live stream of the presentations.

Captioned live stream (10am – 4.30 pm)

I plan to post the recordings afterwards for those that can’t be with us in the day.

Truly celebrate GAAD because accessibility is joyous.

Jumping For  Joy

People Jumping For Joy

Enjoy your day I know I will enjoy mine.

Dyslexia means writing is painful but it makes what little I do write better.

I use IT in nearly every part of my working and personal life.

I’m sad to say it but I spend most of my waking hours looking at a screen like most modern professionals.

Much of this means I have to use the written word. 

Typing on a  laptop computer 
For me reading is easier than writing – apart from reading out loud which comes with a heightened level of anxiety of mispronunciation. 

I read voraciously but do have to re-read things to make sure that I have not skipped important information or misread something.

I am a curious person and the internet is full of things that hold great fascination for me, I am therefore resolved to the fact that the effort of reading is well worth the perspiration.

It’s writing that is really painful for me.

This pain is not entirely metaphorical I used to grip my pen so hard as a kid that my hand would cramp.

 Hand gripping a pencil 
Computers and assistive technology have helped considerably. I frequently use speech recognition, word prediction and would be lost without spellcheckers.  But they don’t completely remove the trauma of writing anything longer than a few sentences.

Colleagues may have noticed my keenness to switch from instant messaging to a voice call. This is no coincidence I can express myself better when I’m speaking. 

Of course not everything can be cut down to a short message or voice call, so I am forced to write. 

If speaking is easier why write?

I push myself to write as I am now because I have ideas that I want to share.  

Because writing is painful I think long and hard before I start writing – I have been thinking about this post for days now. 

This means that my ideas take shape before I write not during the writing, although the process allows me to refine them.

I am mindful of the difficulty some people have reading so want to ensure that what I write can be understood. I am careful and ponderous thinking hard about my choice of words and I try to convey ideas concisely.

Because I am more likely to have made spelling mistakes and typos I dedicate time to proofing and editing. This is arduous as proofreading is notoriously hard for dyslexics. 

Ultimately the effort of editing and proofing is worthwhile as I can check that my message gets across as intended.

Writing is like good whiskey.

If it takes time to produce it’s probably going to be worth the wait.

I believe that ultimately the lengthy fermentation of ideas, barriers to writing and discipline to craft words into something meaningful make for something that is worth reading.

I hope that you’ll agree.

 

Is Accessibility Middleware Really The Equivalent Of Snake Oil?

Sometimes the Internet is likened to the Wild West, it contains exciting unexplored territory, people have freedom to do all kinds of things and rules are not always rigorously applied.

A cowboy on his horse overlooking a valley in Utah

Photo Credit Mark Gunn

One area where this laissez-faire attitude has significant impact is web accessibility.

The impact of poorly written code and technology implemented without adherence to accessibility standards makes it difficult or impossible for users of assistive technology to make use of many of the things that the Internet has to offer.

This is hardly a new problem, web accessibility guidelines have been around for a long time and are well established (WCAG 2.0 is now an ISO standard). There are a multitude of reasons this (some might say excuses); either people are not aware or do not care about standards or are using tools or CMS/publishing platforms that make it impossible to deliver an accessible website or product.

Accessibility is broken for many people despite a lot of hard work.

Broken pane of glass

Photo credit  Jef Poskanzer

Given the explosion in user generated content on the Internet, this problem is not going away any time soon. So what is the best way to enable people to access services and information online when much of the content and the frameworks are not fully accessible?

How can we fix this thing?

There have been a number of articles written recently discussing the pros and cons of using accessibility add-ons or overlays to add features or fix inaccessible code.

Firstly there was Adrian Roselli’s post Be Wary of Add-on Accessibility” followed by Debra Ruh’s article on accessibility overlays in the Huffington Post and then a Karl Groves post in response  with Adrian commenting on both articles in an update of his original post.

Add-On Accessibility

The current state of web & intranet accessibility is poor and the tools that were discussed in Debra’s article were created in response to a general lack of access.

There are multiple different ways of describing add-on accessibility, middleware or overlays:

The first approach

The “separate but equal approach” of creating a second website accessible to assistive technology users. Like Adrian I am surprised that the 21st-century this is still happening given that creating a second site doubles the workload and usually delivers nothing like an equal experience.

The second approach

Provide embedded assistive technology. I have historically been very sceptical of this approach because if you really need assistive technology in order to use a product or service on the web you are going to need it in order to get to the website in the first place.

Embedding assistive technology into your website is like creating an island of accessibility in a sea of inaccessibility.

Island_near_Fiji

A Desert Island Near Fiji (Source Wikimedia Commons)

Despite this, my line on embedded assistive technology has softened somewhat as products have become available that don’t interfere with the assistive technology that many people with disabilities will have on their own computers.

In limited use cases these tools may have functionality that people may have therefore who am I to say not to use them if they do not break web accessibility guidelines.

The third approach – Cures what ails you?

The issue that has been most hotly debated has been over the concept of products aimed at dynamically repairing accessibility issues in websites whilst leaving the underlying code untouched.

Wormer's Famous Rattlesnake Oil advertisement

Source Wikimedia Commons

These middleware tools and their vendors appear to have a reputation in the accessibility industry as being the digital equivalent of snake oil.

Our Choices

Right First Time

Let me be clear from the outset my preference is for planning and delivering user experiences that are accessible from inception, either by making or buying products that meet standards and have been tested to meet people’s differing needs.

The reality is my preference does not match the day-to-day experience of your average browser user be that on the web at large or within companies intranets.

Fix at source / Fix the Source?

Most people are not building their own websites, they have little or no knowledge of the code that lies beneath. Despite what trends would have you believe most people won’t be learning code any time soon, if ever. They will also not have a clue about accessibility standards, that is a fact of life and it’s not going to change any day soon.

If you thought the internet was inaccessible…

Just wait until you get to look at nine out of ten large companies’ intranets. The tools that are used by organisations for many of their core intranet and business functions, portals and ticketing systems are not the sort of thing that can be easily thrown together.

No Entry Sign

Source Wikimedia Commons

They are usually made by big enterprise software companies and most IT departments attempt to deploy as close to out of the box as possible. Despite that there is a complex interplay of hundreds of dependencies; company IT and Security policies and interdependency with other parts of the company ecosystem including legacy IT.  Unfortunately they are usually not paragons of virtue when it comes to inclusive design.

An oft overlooked point is that companies that implement these systems often do not own the source code they are reliant on the vendors.  Once they’ve signed on the dotted line most of their power to influence that vendor evaporates.

Enterprise IT is a complex and often beauraucratic beast projects cost many millions and run for months and years.

Much as we may want to tear it up and start again…

Sometimes you have to admit that even if you do get the go ahead to fix at source the users may not see the benefit for months or even years.

Given the long lead times and complexity of fixing things in corporate environments I can see how middleware that solves the user access issues is attractive and even a valid choice in certain scenarios.

The vendors of these tools should be upfront about the capabilities of their tools and also the level of knowledge, training & intervention required to set them up so that the problems for users are resolved.

Equally people looking to purchase these tools should not expect a magic wand.

Middleware is not snake oil if:

  • It enables users access where they didn’t have it.
  • It expedites access reducing the glacial time-scales of mega-corporate IT.
  • It does not interfere with existing ATs.
  • Implimenting it helps create processes for handling accessibility issues better in future.

So why does it feel like the accessibility industry is circling the wagons?

Wagons in a circle

Photo Credit Don Graham

Partly I think it’s fear of change – people are used to solving a problem in a particular way.  That way is still valid for individual projects but I want to be open minded and embrace the idea that technology just might be better at solving the problem than we currently give it credit for.

I don’t think it’s because people’s income is threatened because there is plenty of broken stuff to keep everyone in the industry working for years to come.

Accept that we cannot fix accessibility piecemeal.

The greatest technology giants of our time know this and that is why they are looking at using their computational power to solve the problems of inaccessible content:

  • Facebook is experimenting with computer generated image descriptions. I don’t know about you but I don’t much feel like retrospectively writing alt text for the worlds face book feeds.
  • Nor do I fancy writing the transcripts to all of youtube’s content in order to produce captions – the 30 minutes per week that we do for #AXSChat is labour intensive enough as it is.  I welcome Youtube’s effort with auto-captions.  They are far from perfect but I do believe that their approach is the right one.

If technology genuinely removes barriers it’s OK in my book.


 

Why not join the #AXSChat conversations that Debra Ruh, Antonio Santos and I host every Tuesday on twitter or catch up with the video interviews that we’ve done with a wide range of people over the last year. www.axschat.com

Accessibility is Personal

It’s that time again.

It’s late May and that means one thing in the Accessibility world: #GAAD (Global Accessibility Awareness Day).  It’s the annual online & offline event Dreamed up by Joe Devon and Jennison Asuncion to reach outside of the sometimes insular world of accessibility and share the passion for making technology and services available to everyone regardless of disability.

GAAD logo

#GAAD is a great thing and each year it gets bigger and bigger. Over the last few years I’ve gone from attendee at events to organising them – this year we’re teaming up with the BBC to hold an all day event in our headquarters in London.  My hope is that we’ll attract and interact with a bunch of people that don’t normally consider that accessibility touches them.  It may not yet but the likelihood is that it does already and it is almost certain that within their lifetimes all of the participants will find that they prefer to use adapted and adaptive tech because it makes their life easier.

Accessibility is Personal to Me

Accessibility is personal to me for several reasons:

I owe my education to accessibility.

I have used assistive technologies for 15 years now and freely admit that I would have struggled to complete my masters without using things like Dictation and Text to Speech Tools (Dragon Naturally Speaking and Texthelp Read & Write).

I owe my job to accessibility.

Yes it is my job to provide accessibility products and services, but without access to them my own working life would be a lot harder.

Accessibility will mean my parents stay independent for longer into their old age.

My father is deaf (uses a hearing aid) & has mobility problems, my mother is visually impaired (cataracts) although neither would identify as being either.  Both benefit from being able to use technology that has been personalised for them.  Both love their DORO mobiles and their Ipads.

Accessibility is personal to users – It is allowing personalisation.

Everyone is unique, we all have different needs and use technology in ways that suit our needs.  Accessibility is all about allowing people to do stuff in a way that suits them best.  Sounds a lot like user preference right?  Alastair Sommerville (@AcuityDesign) refers to accessibility as “Extreme Personalisation” Watch the interview with Alastair that we did for Axschat a in February.

I really like this concept but some of the most useful accessibility features for making content easier to digest are widely used things such as larger text, reduced white point reminders, speech recognition, once upon a time these things would have been extreme they are transitioning to the mainstream.

Every time I get frustrated with accessibility and the challenges of delivery, I take a step back and think of the things above, I remember why I love accessibility.

Happy Global Accessibility Awareness Day.

On fonts and dyslexia

One of the most frequent questions I get asked is around using special fonts for people with dyslexia.

There has been a lot of stuff about dyslexia friendly fonts over the years starting with comic sans, read regular and most recently with open dyslexic and dyslexie. There are various claims made as to their efficacy.

Here are samples of the two most common fonts aimed specifically at dyslexia

Sample of Open DyslexicSample of Dyslexie Font.

They certainly attract a lot of attention in the press and on social media.

I know they are trying to be helpful but I don’t like them or find them helpful.

As a dyslexic person I find myself reacting very negatively to them not just because they are portrayed as a panacea but because they are not to my taste. They are very clunky and unattractive.

On a (screen) tablet,pc or phone I have a preference for well spaced highly legible text on a just off white background as I find that the glare from pure white slows me down.

Other people will have other preferences. This is important.

Allow people to chose – don’t assume that what works for one will work for another.

This study would appear to show that they are not as effective as they claim.
http://www.luzrello.com/Publications_files/assets2013.pdf

Here is a link to Adrian Roselli’s write up from CSUN on research findings presented there.

http://rosel.li/031415

The article below is a good balanced read from a typography point of view.

http://www.commarts.com/Columns.aspx?pub=6950&pageid=1785

It’s commonly accepted amongst the UK dyslexia community that sans serif fonts are preferable on a screen see the British Dyslexia Association pages:
http://bdatech.org/what-technology/typefaces-for-dyslexia/

However layout contrast and font size are at least as important if not more so than the font choice. Configurability and personal preference are therefore key.

Signage fonts generally are designed with legibility and intelligibility in mind and there has been a lot of research into creating good ones. They have to work for people who’s brains are already under significant cognitive load from driving.

The award winning gov.uk uses a signage font “New Transport”
Sample of New Transport

And a personal favourite of mine (including the research) wayfinding sans
http://ilovetypography.com/2012/04/19/the-design-of-a-signage-typeface/

Example of wayfing sans

Interesting Yet Inaccessible: To Share Or Not To Share?

Image

My Dilemma

Today I got called out on twitter by David MacDonald – a fellow accessibility professional for reposting a tweet by Jared Spool which contained an image of text.

I frequently get faced with a dilemma when someone posts content that is not accessible yet I find interesting and worthy of sharing.

David MacDonald calls out Neil for retweeting an image of text posted by Jared SpoolDo I share?

When I make content I strive for it to be accessible but a lot of stuff on social media is not created by me but I may think people would like to know about it.

Do I never share?

That would stop me from sharing a lot of interesting stuff on principle. But what little content I did would be fully accessible.  Maybe if you consider social media to only contain ephemera then this should be your course of action.

Do I fix other people’s content?

In this case I have fixed someone else’s content.

However it’s taken me much more time than the collective effort of all the people who created the original content and responded to it so is not realistic on every occasion:

What about when the medium is innately inaccessible?

Twitter is a short form medium. I wish that it provided the opportunity to create alt text inbuilt. I wish that the default mobile clients supported these features – they don’t yet. As a consequence sometimes I share stuff that is not accessible.

The Text In The Offending Image:

I hope that in this year to come, you make mistakes.

Because if you are making mistakes, then you are making new things, trying new things, learning, living, pushing yourself, changing yourself, changing your world.

You’re doing things you’ve never done before, and more importantly, you’re Doing Something.

So that’s my wish for you, and all of us, and my wish for myself. Make New Mistakes. Make glorious, amazing mistakes. Make mistakes nobody’s ever made before.

Don’t freeze, don’t stop, don’t worry that it isn’t good enough, or it isn’t perfect, whatever it is: art, or love, or work or family or life.

Whatever it is you’re scared of doing, Do it.

Make your mistakes, next year and forever.” — Neil Gaiman