Simple Things Matter

Saw this question on social media recently: What could you talk about for 30 minutes without thinking. Three things come to mind right off the bat: 1. The right way to make tea, 2. The history of Marmite, and 3. Disability and Accessibility. Let’s be honest, I can talk for far longer than 30 minutes about Disability and Accessibility and do on a daily basis. Like the art of making a good cuppa (which will take me a lifetime to master), disability and accessibility are topics I continue to learn about, every day and sometimes that learning still surprises me.

I love to start a good talk with the definition of disability, both the old version and new which is way better. Disability used to be defined as something wrong with the human, something broken or ‘impaired’. The World Health Organisation redefined disability in 2011 as a mismatch between the person and the environment they are in – basically, a design challenge. This changed everything. Instead of being something wrong with me because I’m deaf, it became an opportunity to create and design solutions to solve the mismatch between the human and the sound in the room. Accessibility is one vehicle to help do that. Empowering people with disabilities in both the physical and digital world, whether it’s a concrete ramp, captioning in a video or alternative text on an image. I am so grateful to the WHO for changing our lens on disability. I’m proud to be a member of this cool gang - I’m deaf, not impaired.

The demographics always ground me, and still surprise folks. The number of people with disabilities tops 1Bn+ and counting, closely correlates with age and the majority of disability (~70%) is non-apparent, invisible to the eye. You can’t tell if I have a disability from looking at me, but once you see my ASL interpreter you put two and two together. Disability traverses so many areas, from vision to deafness, mobility, cognitive, neurodiversity and mental health which will impact 82% of us at some point in our lives. It can be permanent, situational whether you’re driving or hitting power door openers cause your hands are full, and it can be temporary – because disability is the one section of diversity you can join at any time.

Three months ago, this week, my bag was packed ready for a jam-packed week at an accessibility conference in California. I was joining 95 other Microsofties and honestly excited to get on the plane and talk about all this and more. On the way to the airport, my husband and I stopped at the ER to get my leg checked. For no reason, my left leg had started to hurt 24 hours earlier. That last minute decision likely saved my life. Within an hour, they had found a 2ft clot that ran from my foot to my stomach, painfully close to my lungs thanks to a rare genetic abnormality I never knew I had. My flights were cancelled, ICU bed found, and surgeries booked. Somewhere in the crazy we called the clot – Gerry. Months on, Gerry and I are still figuring each other out. I’ll admit, I have called him a few (unrepeatable) things especially when I realized he caused long term damage to my leg, but we are learning how to live with one another. He is stubborn, sneaky and attention seeking but calmer these days and significantly smaller in stature thanks to an incredible medical team. I’ve been helped in my recovery by my two trusty steeds Michael (cane) and Rosie (cane) and a gang of amazing humans at work and home that I can never thank enough.

The learning has been immeasurable. Gerry gave me a visible disability; one you could see as I walked in the room. Different to my deafness and even though I live in the world of disability, I’ll admit to being a little taken back in the beginning by the curiosity. People, many I have never met before, wanting to know every detail of my injury. From how it happened to the treating doctor. I could write a book with the advice received, some of it helpful, but if I’m honest most of it not. Your skiing injury just isn’t the same as a 2ft blood clot. Some days I could handle it, others I couldn’t. If I told you that my leg was because of a vicious racoon attack, shark bite or jellyfish sting – I apologize now. You asked me on the wrong day. People also see my cane and run to throw open doors to help. The intent is kind and generous, but there was one very unattractive moment when I bit the floor - I was leaning on that door to keep my balance.

The way we work and communicate with people with disabilities has never been more important. Simple things matter. I chatted with friends on the team and in the community and found that my experience isn’t rare or uncommon. Together, we’ve compiled a list of seven quick things to think about and one theme that you’ll pick up as you go through.

1.      Ask. Ask before opening a door, touching a wheelchair, cane, or any device being used by a person with a disability. It’s part of them. One stranger grabbed my cane out of my hand so they could see the design. I can see the attraction, but that cane was holding me up! Alternatively, with friends, I’ve handed my cane over for folks to check it out (and even decorate it!). It’s a sign of trust and friendship, but I decide when and how. Colleagues who use power wheelchairs feel the same, they love it when friends hug, touch, lean on their chair, but strangers randomly approaching, not so much. With door opening, bear in mind that folks may be growing skills to open doors independently. Or alternatively, may want help finding a chair, writing down what someone just said, or help finding a quiet space to decompress from noise or the chance to talk through a scenario and problem solve it together. Ask!

2.      Accept each person as human. You do not need to know why they are deaf, blind, use a wheelchair or cane, or what caused a mental health condition. And you really do not need to know what doctor they are seeing. Please, that and more is personal and private information that you do not need to know. If someone wants to share that information, they will offer it independent of probing questions. And just to get this one out of the way, no, most disability cannot be cured.

3.      Disability is not a bad word. I’m proud of my disability. My deafness is a part of me, part of being human and it made me who I am and honestly, how do you live in that noisy world! I’ll admit, I’m not a fan of Gerry inhabiting my leg, but the disability he has caused is a part of being human, and I am learning from it. I’m proud of all that I am.

4.      Do say hi. Act normal! If you would normally say hi, don’t run because you don’t know what to do. Some tips, if you’re greeting a person with a wheelchair, don’t crowd – pull up a chair and get on the same level or be a few feet away so you’re not causing neck ache. If chatting with someone who is deaf, look at them not the interpreter but know they will flick between you and the interpreter to understand what’s going on. If you don’t know what to do or say – ask.

5.      Educate on etiquette. There’s a lot of debate about words to use, and I’ve seen advice change over time. It also varies by country and by individual - as humans we have the right to have a preference in how we refer to ourselves and it’s important to be respectful of that. The general rule is to follow the person first language, a person with mental health, with cancer, who uses a wheelchair. However, some communities prefer ‘identify first’: autistic (check out #actuallyautistic), blind, deaf or hard of hearing. Again, respect here is crucial, and listen to what people say and use. If in doubt, yup, you guessed it – ask.

6.      Make sure you’re accessible. Obvious but lets unwind this one a little bit and start with digital accessibility. First make sure your document or website page is accessible and a simple rule - if you don’t know if it is accessible – its not. Use tools available to help you, whether its Acc Check built into Office 365, or our free open sourced website checking tooling Accessibility Insights. Turn ON the captioning! Also, think through the scenario. If you are offering ASL interpreters on request, don’t ask folks to call a telephone number to make the request. You may laugh, but it happens all the time. I have called many companies and had one sided conversations. In the physical world, if organizing an event, or get together that everyone can get in the building and if you’re giving away awards, it is never appropriate for a person with a wheelchair to accept differently than anyone else. Make sure you have ramps and captions and audio descriptions for your videos! If in doubt, check out resources online at www.microsoft.com/accessibility, or yes ASK!

7.      Follow principles of Inclusive Design. Yes there is benefit to putting on a set of soundproof headphones, but it will never replicate the lived experience of deafness. My experience with a cane for a few months in no way replicates that of people who have use canes daily. If you are designing anything – speak to the people that have lived experience and leverage the wealth of knowledge that exists in the disability and accessibility community to ensure that you are building something that will help to address the mismatch between person and environment. Want more on inclusive design is, watch how the chicken crossed the road. But on serious note, don’t guess. Ask.

There is a wealth more on this topic, my seven could easily be twenty five and it barely touches the surface of something that I continue to learn about through my own journey and listening to the experiences and journey of others. I’ve continued to compile some of my own ‘Simple Things Matter’ in a twitter moment here, please nudge me if you see anything that should be added to it! And I do recommend two videos 1. There’s no need to be awkward (2014, DCGov), oldie but goodie and absolutely the right sense of humour! 2. Accessibility at a Glance Series (Microsoft), quick 2-3 minute videos on everything disability and accessibility that are rich and fun in content, and accessible in delivery. 

Thank you for taking the time to read and treat every moment, even if it involves your own version of Gerry, as that learning opportunity. I do believe it will make the world a more inclusive and accessible place.

The very serious small print. On average, a person dies every 6 minutes from a blood clot. Blood clots are no joke and there are often have very few symptoms before they get to scary time. Please, know the symptoms and if you have any symptoms, don’t go to the airport – get it checked out. Check out Stop the Clot or bing DVT and Blood Clot for lots more information.