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Tag: Disability

The Disability Price Tag

How bad service design punishes those with a disability.

If you’ve never heard of the ‘Disability Price Tag’; the simplest way to describe it is that it’s the price you pay for costly mistakes due to symptoms of (or a byproduct of) your disability.

An image by the ADHD treatment centre describing the common issues that cause the 'ADHD tax'
The ADHD tax – as described by the ADHD Treatment Centre

People with ADHD are so often hit by the disability price tag; it’s been nicknamed the “ADHD Tax“, some obvious examples of this are parking and traffic tickets, late fees, high interest debt (i.e. credit cards), and low credit score (leading to higher interest debt, inability to get loans, problems renting apartments and buying cars, etc.) But this isn’t the only way people with disabilities are being hit financially.

Heating, insurance, equipment and care cost’s are all higher for people with Disabilities; and the Scope Extra Cost Commission in 2014 found that people with a Disability faced an extra £550 a month on their living expenses due to disability-related expenditure. In fact a study in 2015 by MacInnes, T., Tinson, A., Hughes, C., Born, T.B., Aldridge, H: Monitoring poverty and social exclusion found the poverty rate among people in families where someone has a disability is 8% higher than of those in families where no one is disabled.

For able-bodied and/or neurotypical folks, these can be really hard to comprehend; and even when they can comprehend the truth is, they have little sympathy for it.

But even if we acknowledge that people with Disabilities face the Disability Price Tag; there’s little recognition of the fact that bad service design can make these problems significantly worse for people with disabilities.

Many companies deliberately make it hard to cancel your subscription after a free trial period; or to register a complaint or appeal an unjustified fine; this is a fact everyone can easily recognise. What people fail to recognise if that this disproportionately affects people with disabilities, who are likely they to find it much harder to navigate these systems.

An image showing some complicated cancellation instructions
Complicated cancellation instructions

Let’s examine an example we’ve been dealing with recently; my family recently paid for parking in Manchester‘s Arndale shopping centre; where they’ve recently swapped their parking system to a new paperless (but still not digital) system.

The new system requires you to enter your Registration number on the machine and pay, but doesn’t issue you a ticket. There are a number of flaws in here that makes this utterly inaccessible and un-user friendly for people; so lets consider the issues this could cause:

  1. You have to guess how long you’ll need to park; if you need longer there is no easy way to top up your time without physically returning to the machine to extend it. Not very practical for those with a physical impairment, or who have caring responsibilities which would make nipping back to the car difficult.
  2. As users aren’t issued a ticket, and the machine doesn’t capture your mobile number or any way of issuing an e-ticket or reminder, users have to remember what time their ticket ends; this is not designed to support those with a cognitive disability which may make remembering information difficult.
  3. The system requires you to enter your registration number from memory; there are no reminders or prompts on the system; which features a normal alpha-numeric keyboard, relying on you to know your registration by heart; which means it can be very easy to enter your registration plate wrong. As the system doesn’t issue you a ticket/receipt; nor does it email you your ticket information, there is no way to check you entered the information correctly. This can easily trip up people with a learning difficulty like Dyslexia, or for those whom the English Alphabet is not their default.

My partner has Dyslexia and ASC and I have ADHD (always a winning combination when it comes to the Disability Price Tag). When we parked and went to purchase the ticket we managed to accidentally mix up the O for a 0; because we didn’t receive a copy of our ticket, we had no way of knowing we’d made this mistake, and simply assumed everything was fine. Upon returning to our car we spotted the fine sitting on the car window. We went to speak to the parking warden, who acknowledged we did indeed have a valid ticket on the system, but that the reg was technically wrong, and therefor we’d been fined. The warden acknowledged this was a very common issue that caught many people out; and recommended we appeal.

Appealing in and of its self is not an easy process; and what many able-bodied and neurotypical folks don’t understand is how much privilege it takes to appeal things; and how many spoons it can take to do so. Lets use our example of the the parking fine again:

  • The details of the fine and how to appeal it was only available on a piece of paper, and you have to wait unto 24hrs for the system to be updated before you can appeal (very easy to lose for those with ADHD etc.)
  • The print is extremely small (not good for those with a visual impairment and/or Dyslexia etc.);
  • and the reference number is not only small but also long and complex (very easy to get wrong for those with Visual Impairments or ADHD/ Dyslexia etc.)

Of course, to make matters more frustrating Manchester City Council then rejected the appeal, saying it’s the users responsibility to make sure they have bought their parking ticket correctly; which is a prime example of the higher price tag people with a Disability can face for doing that so many people would consider relatively simple.

So, how when we’re designing services can we do better? The answer is easy than you think; carry out research and test with users! User research and testing aren’t only applicable when we’re developing web services; they are equally important when developing and rolling out new systems in the physical world. Within Disabled service provision, this co-production of services is being seen as more and more important.

Co-Production is a term used to describe the partnership between people with disabilities or health conditions, carers and citizens and those who develop and run public services. While the upfront costs of co-production may seem higher; by designing services with users needs at the heart, we can significantly reduce the financial and emotional burden inaccessible services place on those with Disabilities; in turn improving their quality and way of life.

Being a visible leader with an invisible disability.

Hi, I’m Zoe and I’m a NeuroDiverse Senior Civil Servant.

This is me! (Photo curtesy of @RachelleMoose)

Last week I attended Civil Service Live, it was an interesting day, with sessions on everything from AI and keeping abreast of new technologies, to Transformation to resilience and personal wellbeing. The session that stood out most for me was the “Making Government an event greater place to work” which was an interesting session featuring several people talking about their own mental health, and colleagues from DWP’s Diversity and Inclusion Team talking about the work they have been doing to make invisible disabilities more visible.

The team has been working with neurodiverse colleagues to make short videos to help neurotypical colleagues understand their disabilities. This included a video on sensory processing disorder, and how many colleagues with ASD can find what some people might call normal background noise overwhelming; and another video on how some people with Dyslexia can struggle with reading, with text moving around the page.

Exmaple of how someone with Dyslexia can perceive text

I thought these were really useful tools for colleagues to help increase understanding, and to normalise invisible disabilities.

After the session I got talking to one of the speakers and a few other attendees about some of the mentoring and leadership schemes that exist for Disabled people, and that unfortunately these are not widely visible with a lot of people not knowing they exist or how to join them. We also discussed the need for more visible representation of neurodiverse people within senior leadership.

I was diagnosed with Dyspraxia when I was 14, and nowadays I’ve recognised (through parenting my child through the intricate diagnosis process for ASD and ADHD) that I probably have ADHD as well and am now in conversations with my GP to get a referral for an assessment.

Writing ADHD on a blackboard.

When I first joined the Civil Service (technically as a temp back in 2002 before I went to university) I was doing a data entry job, and when I admitted to a senior manager that I had Dypraxia he told me to keep it quiet or everyone would wonder why he’d hired me. Having a learning disability was definitely seen as a barrier to progression.

I remember when I joined the Ministry of Defence as a Fast Streamer back in 2006, I looked at the data for the Senior Civil Service at the time and realised that less than 3% of colleagues in the SCS had a disability, and of those, the number who were declaring a non-physical disability was in single figures (in the MoD at least). At that time, I made the decision that I would do everything I could to reach the SCS, so I could help change those stats.

Until a few years ago I’d never met an SCS person who I knew was neurodiverse. I was talking to a senior leader asking for advice on speaking at conferences as it was something I’ve always struggled with in terms of confidence, and he admitted that he was Dyslexic and couldn’t read of prompts, so would always have to learn his presentations by heart. This was someone I had known for over a year, and it felt like I was being told a secret that they were ashamed of, but it made me feel hope. Here was this person 2 grades above me, who also had a learning disability. It was possible.

Several years ago at a leadership development session designed to help G6 colleagues pass the SCS application tests, one of the senior colleagues stated that “anyone can just learn to do maths with a little bit practice”. I ended up speaking up and saying that “as someone with a learning disability I found that kind of sweeping statement very unhelpful”. After the session I had another colleague approach me and ask if I could provide some mentoring to one of their members of staff who had Dyslexia and wanted to progress in their career but they weren’t sure if that was possible given their disability, and my colleague believed that talking to another neurodiverse person might help their confidence.

Over the years I’ve mentored perhaps a dozen people, some through official schemes, but just as many have approached me and asked whether I would mentor them as they themselves are neurodiverse and there aren’t that many senior leaders out there who own up publicly to having a learning disability or being neurodiverse. As such people feel that there aren’t people in senior leadership positions who have learning disabilities or are not neurotypical.

Within the Civil Service and wider public sector we are doing more now to normalise Disability, there are great leadership and development schemes like the Possetive Action Pathway out there now to help build capability for Disabled colleagues or recruit more neurodiverse people. DWP and HMRC have been running Autism work placement programmes, GCHQ has it’s “Positive About Disabled People” scheme and there’s the Summer Diversity Internship programme; Diversity and Inclusion networks across the Civil Service are working to help support Disabled colleagues, and schemes like the ‘Workplace Adjustment passport’ are a great tool for disabled colleagues and their managers.

A picture of a ‘noise -o-meter sometimes used to help people with Sensory Processing Disorder indicate how they are perceiving the sound around them.

But I still believe we need more visible neurodiverse senior leaders, and leaders with both visible and invisible disabilities. Figures from 2018 show that still only 5.4% of SCS colleagues have a disability. I couldn’t find any data on the percentage of those colleagues whose disability was visible, invisible or both, but it’s safe to say we need to normalise neurodiversity at all levels.

For those of us who are neurodiverse in the Senior Civil Service, we need to speak up and say to our colleagues that we are here. It is possible. We bring something to the table, and so do you.