I feel hopeless, rejected, and a burden on society - one week of empathy training

by @edent | # # | 6 comments | Read ~10,080 times.

I've spent a week cosplaying as a disabled user. And I hate it.

A couple of months ago, I attended a private talk given by a disabled colleague of mine. "Everyone should believe disabled people's stories about accessibility problems," she said. "But, given that people don't, here's what I want you to do. Spend one week pretending to be disabled. Pick a disability and try to interact with services as though you have that impairment. Build up some empathy."

So I did.

For a week, I pretended that I was in a wheelchair. I didn't go the full way and buy a cheap chair and try and commute in it. Instead, whenever I was invited to speak at an event, or go to a meeting, I asked if the venue was accessible. To my delight, all of them were. A couple of people told me they'd arrange ramps to the stage, or that they'd need to adjust a podium height if I wanted.

Except one. I turned up to find the talk had been moved to the 3rd floor of a building with no lift. I'd specifically asked the organisers if the room was wheelchair friendly. They'd had more people turn up than expected, so moved to a bigger room. At no point did the organisers contact me.

I turned up (without a chair) and briefly considered leaving. Instead I sent a sternly worded email.

The week left me feeling fairly hopeful. OK, it wasn't a full test - and there was a failure - but in my little bubble of society, people are (mostly) welcoming to wheelchair users.

Then it all went wrong.

The next week, I tried something different. Approximately 10% of people in the UK have a speech disorder. In the USA, approximately 7.5 million people have trouble using their voices.

So, I tried to spend a week without using the phone to contact companies. It was a fucking disaster.

I wanted to upgrade my Internet access to a faster speed. Virgin Media provide a web chat - and after a few hours of waiting (seriously!) I had this frustrating exchange (edited for clarity - typos left intact):

  • John: If you wish to avail of this deal . I advise you to call our Customer Care Team.
  • Terence: I can't use the phone due to my disability. Can I chat online to do it?
  • John: To reach our customer care. You can just download the app and quickly chat with the team there;
  • Terence: I've tried using the app - but no one answers. Please can you help me. I've been a customer for 6 years.
  • John: We appreciate your loyalty Terence, but we are are only limited to regular upgrade transacations.
  • Terence: So disabled customers can't upgrade via chat?
  • John: For persons with diabilities, there are options at "Contact Us"
  • Terence: I tried that - and it redirected me here. Is there anyone who can help?
  • John: I'm so sorry ternce but transactiosn like this can only be arranged by calling Custome care team.

So I asked to cancel my account.

  • Terence: If I want to cancel my account (without using the phone) what can I do?
  • John: the only option though is by calling . Call 150 from your Virgin Media phone or mobile, or call 0345 454 1111 * from any other phone Monday to Friday, 8am until 9pm Saturday, 8am until 8pm and Sunday 8am until 6pm For our text relay service call us free on 18001 0800 052 2164 You can also contact us through a sign language interpreter. Open 7 days a week, 8am until midnight. *For call costs to our team from a Virgin Media home phone, visit our Call costs page. Calls from other networks and mobile may vary.
  • Terence: This is discrimination. I don't know sign language and I don't have text relay. I can't use my voice. I want to contact someone to cancel my account.
  • John: If the voice is the issue, i advise you ask someone to call in your behalf.
  • Terence: I am perfectly capable of managing my affairs - and I don't want to give my password to someone else.

And so it went on. I spent hours chatting with different people, and with managers. None of them could help me with an upgrade, or with a cancellation.

Virgin accessibility police says:

2.1 We are committed to ensuring both vulnerable and disabled customers get fair and appropriate treatment.
2.2 To ensure we meet the needs of current and prospective customers, our sales and support teams are trained to identify and support the accessibility and vulnerability needs people may have.
https://www.virginmedia.com/corporate/media-centre/public-policy-statements/accessibility-and-vulnerability-policy

As far as I can see, that's a load of bunkum. If you don't have a voice, you're locked out of Virgin's upgrade and cancellation routes.

I raised a complaint, and got back this fairly generic and dismissive response:

Please accept my apologies for this experience, , this is not the experience we want for our customers. We have fed your comments back to the relevant team, this will help us to highlight certain training needs and form coaching. There are areas where improvements can always be made, and as a customer-orientated organisation we are always endeavouring to improve both how we deal with customers and the range and quality of the services we offer.

No actual resolution. It made me feel like a burden for even asking for help. I can't go through the "normal" channels - I have to rely on the good graces of a complaints team. It was frustrating and demoralising.

The same thing happened with Thames Water. If you want to move your account, they ask you to fill in a form online. Hurrah! Until you get to one bit of it, where it tells you to ring a phone number.

I had a frustrating chat on Twitter with Thames Water. They admitted the phone number was wrong, and struggled to provide me with contact details.

I tried to use their complaints process, but that requires a 10 digit account number. But Thames have upgraded me to a 12 digit number - so their own form doesn't work!

So now I'm stuck in limbo. Waiting for someone to get back to me. I've told them not to call - but I bet you they try to ring me.

My bank had similar issues. UK banking is great for most online users. I was able to set up new payees, order a new card, cancel Direct Debit - all without using my voice. And then I tried to buy a house...

I needed to transfer a large sum of money in order to put a deposit down on my new place. It was larger than the standard transfer limit. And the only solution was to call them up.

They do have an online messaging service, but from experience it's slow to answer - and I needed to transfer the money immediately (the home buying process in England is dysfunctional). If I truly had no voice, I'd have lost the house I was trying to buy.

I appreciate the need for security. And for double-checking transactions. And all that good stuff. But I was trapped. So I caved in and called.

I have no mouth and I must scream

You should believe your disabled friends and colleagues when they tell you how crap the world can be.

You should also try empathy building exercises. Here are some examples, please add your own in the comments:

  • Go a couple of weeks without using the phone. Which services are closed off to you?
  • Tell people you need an accessible venue for your meetings. How do they respond?
  • Turn off images in your browser. Is there enough alt-text for you to navigate the web?
  • Switch on subtitles and mute your favourite shows. Do they even have subtitles? What do you miss?
  • Hire or buy a wheelchair for a week. How easy is your office to navigate? (Please don't block the accessible loos though!)
  • Buy a pair of arthritis simulating gloves. What does the world feel like with limited mobility?

But, most of all, record how it makes you feel. After a few fruitless hours pleading with my ISP, I was ready to kick something. Now imagine that every day.

Whether you work in tech or not - it is your duty to make sure that no one feels demoralised or rejected because of the systems you build.

6 thoughts on “I feel hopeless, rejected, and a burden on society - one week of empathy training

  1. Carl-Erik Kopseng says:

    I was a bit skeptical when reading the headline, but your writing was good. Absolutely a wake up call fo rmany, I think.

  2. Alex says:

    Interesting experiment. Thanks for sharing it.

    I do wonder what kind of a universal system could be implemented for closing your account without voice. I mean, banks are happy to close your account over the phone or whenever you send in a letter. Some let you close it directly from Internet banking.

    But would those same banks or any other organizational, be willing to do it over live chat? What is the actual roadblock here?

    1. Hugh says:

      The bank I work for allows you to close your account in the app or via chat.

      The roadblock is internal procedure which varies wildly between organizations depending on who regulates them and how regulated they are (if at all) and the ability for processes to change. Often those on the frontline who see the processes failing have no way to change the procedure or pass on feedback that is listened to. Depending on how empowered the organization makes the employee feel they might go away and try to find an alternative, but very often they are tied into following a set procedure which if they deviate from has the potential to get them fired.

      I'm glad to say my employer doesn't suffer these issues and we can fix broken procedures and make exceptions with relative ease 🙂

  3. RVKlein says:

    I really enjoyed this article for reasons I could not fully explain at the moment. Thank you.

  4. Thank you for trying this.

    As a personal who has had real (but, it has turned out, temporary) disabilities, you’ve captured some of the frustrations accurately. One of my experiences when I could only walk for short distances with a walking stick and was in constant pain: I was given an award (lovely) at an otherwise accessible conference that I managed by renting a powered scooter chair to get around (expensive). To get the award I had to struggle painfully up some steps into the stage.

    I’d encourage everyone to try a few temporary disabilities.

    What you can’t easily replicate is the experience of that disability being relentless and maybe never ending. I didn’t know that my hip replacement would work and I can clearly recall watching someone effortlessly get up out of a chair to walk across the room and wondering what that felt like (I’d forgotten) and whether I’d ever again have that blissful luxury. I can also clearly recall the “spoons” – I’d only got so many spoons of activity available to me each day and I had to plan carefully how and when to use them. And the speed bumps! Every single one was agony.

    Like I said, I was extremely lucky and my hip transplant worked perfectly. So I’m not claiming in any way that I truly understand a relapsing/remitting, or lifelong, or deteriorating disability.

    Mostly I think is is a very big “plus one” for your point about listening to what people with disabilities tell us and believing them.

  5. Oh accessibility is such a minefield. Since spending more time caring for an elderly, partially sighted, partially deaf relative, I have learned so much more about accessibility than I ever did from workshops, seminars or panel sessions. The simplest things become difficult like reading food labels, even with a strong magnifying glass. Opening packets and jars. Using the TV remote control or trying to read the EPG. Using the telephone when you can't see the number to dial. Reading letters from the hospital about appointments or treatments (nothing in large print, even from the eye department!). Turning appliances on and off. Using the oven when you can't read the temperature dial. It's a whole other world.
    There is no universal fix. But empathy, kindness, common sense and the human touch go a long way to alleviate these day to day obstacles.

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