AXSChat Podcast

Unlocking the Path to Authentic Disability Inclusion: A Conversation with Ella Decker

November 20, 2023 Antonio Santos, Debra Ruh, Neil Milliken talk with Ella Decker
AXSChat Podcast
Unlocking the Path to Authentic Disability Inclusion: A Conversation with Ella Decker
AXSChat Podcast +
Help us continue making great content for listeners everywhere.
Starting at $3/month
Support
Show Notes Transcript Chapter Markers

Imagine having a front-row seat in an enlightening conversation about accessibility and inclusive design. That's exactly what we offer you in our latest episode with our guest, Daniella Decker. Drawing from her unique experiences as a caretaker for her aunt with schizophrenia, Daniella brings the world of disability inclusion into sharp focus. We ponder over the importance of aligning internal systems, culture, and the need for authentic representation and human-centric design in promoting inclusive products or employment. Daniella's metaphor of the octopus, describing the transversal nature of accessibility work within organizations, is a standout moment you won't want to miss.

As we advance into the episode, we delve into the invaluable role of employee feedback. We discuss how global listening can drive change, and the power it holds in understanding the experiences of employees with disabilities. Don't miss our discussions on the role of brand stories and language in shaping a company's approach to inclusivity. We share valuable strategies and examples from companies that have successfully championed inclusivity. We caution against the pitfalls of relying on just one person to drive disability inclusion and stress the importance of asking the right questions. This episode is a treasure of insights for anyone with an interest in promoting disability inclusion and accessibility in the workplace. Tune in for an enlightening, thought-provoking journey into the world of disability inclusion.

Support the show

Follow axschat on social media
Twitter:

https://twitter.com/axschat
https://twitter.com/AkwyZ
https://twitter.com/neilmilliken
https://twitter.com/debraruh

LinkedIn
https://www.linkedin.com/in/antoniovieirasantos/
https://www.linkedin.com/company/axschat/

Vimeo
https://vimeo.com/akwyz




AXSCHAT:

Daniella Decker

NEIL:

Hello and welcome to Axschat and I'm delayed that our guest today is Ella Decker. Ella and I met recently at the M Enabling conference and then she took pity on me and marched me around DC, all afternoon. But she does amazing work in the field of accessibility, inclusive design. And you're working for a portfolio of different organisations at the moment. So, do you want to describe yourself and what you do, so I don't get it wrong.

ELLA:

Yes, absolutely. I think it's important to highlight is the why behind this work, and that's how I like to introduce myself. So, I grew up in San Diego. I was a premier caretaker for my Aunt who has schizophrenia, she was diagnosed at a young age, but also, I myself at a young age, was really that kind of conduit between home life and then externally, you know, what happens when we talk about systems that aren't built for people with disabilities, including our social systems. So, interactions kind of on a day-to-day basis with other people. And so, that is how I dipped my toe, into the world of disability and how I think about disability inclusion. And then, since then, had been fascinated by it. So, started taking sign languages classes at and a then continued on studying and Galdet and in DC at American and for the last ten years or so, kind of used that as a foundation for my work with quite a few very different companies from assistance tech organisations, development finance, institutions, as well as really large named brands that are just also dipping their toe into the disability and accessibility space. And so, helping them think about strategy, think about authentic representation and messaging, as well as the wholistic picture. I think about accessibility or disability inclusion, needing to be done from the inside out. So, not performative work but really making sure you're aligning your decks before you're going out to market and talking about inclusive products or inclusive employment or accessible technology. So, yes. Thank you, for having me.

Ella:

It's a real pleasure to have you here. And I love to see the systems thinking approach to organisations or accessibility and inclusion. I do think that there is a real challenge and a balance between getting all of your ducks in a row and sorting out all of your processes, which is a huge undertaking and understanding when to communicate. So, it's not about sort of performative allyship or A11Yship. But you know, if we don't talk about it we also don't make people aware. So, it's that delicate balance, I think between you know, really having something tangible and starting to get it into the mindsets and the consciousness of people. So, I really appreciate the approach that you're taking to bring stakeholders on board. And I think Debra also had a question.

DEBRA:

I did, thank you so much Neil, for giving me the floor. I've known about Ella's work for a long time and I think, one thing that I like about your work Ella, is that you are not looking at it from just a compliance lens I guess is one easy way to say it. Because, you now, we know how to make things accessible now. We know how to make things accessible. It's just, do we really have the will to make sure that all humans can participate. And I know, from your work, that you also are really looking at it from almost a human centric design too, which is silly. You would think everyone is looking at it that same way but often they are not. Especially here in the United States. So, that's something that always attracted me to your work because it just felt very authentic. And so, I was just wondering if you could comment a little bit on the need for us to be more authentic and really understand why we are even doing this. What do we really ... after all said and done, what are we trying to accomplish here. I thought it would be very because I know about your work and I would like for you to tell the audience, you know, where you think, where should we be going?

ELLA:

Yes, I think about this work, kind of flipped on its head, in a way that an END or an EY would think about systems design thinking, which is change management. So, getting a really large organisation, let's say, I don't know, one hundred to 200,000 people to change their mindset. It doesn't happen overnight and it is not just about the systems but it's ultimately about the culture. So, if people are at a base level of understanding why disability inclusion or authentic representation or systems designed thinking, that's inclusive of accessibility, they are just at the starting point. Then it's going to take a really long time to change the culture, which ultimately will inform the system. So, I think when we talk about this work, it's not just thinking human centre design, how does this influence one person, one customer, one employee. It's thinking about well, how is that manager or how is that team set up for success, if a neurodivergent employee were to join this workforce tomorrow. And, I think what is often a challenge as well, is this work is siloed in the sense of, maybe it's living in compliance or accessibility Centre of Excellence and then ultimately, thinking about how to influence that change over time is a challenge and I like to think of this kind of work or that person as an octopus, so they are reaching their hand tentacles and several different parts of an organisation but, ultimately that means that that person is set up from success from beginning to end. Meaning, they have got the authority, the trust and the responsibility to do that, as an individual contributor, rather than okay, we are stuck in this island. We are going to try and wave our hands and get people to come here. I think it is a little bit of both. So, always thinking about your consumer, your customer, your employee, as centre for a change. But ultimately, in order to be influencing change around an organisation, you have got to be able to hop in different puddles and some will be that jack of all trades.

Ella:

I love the octopus analogy. And I like to think I have my tentacles everywhere in an organisation. But, it is true. It's a transversal topic. You can't address the culture without addressing it across multiple different levels and parts of an organisation and when we start going multinational, as well you have got additional cultural, you know, things to take into account and language and all of the rest of it. So, large organisations are complex anyway but when you start going across borders, it becomes more complex and then you have, like multiple different speeds, multiple different levels of maturity are so on. So, you might well have parts of an organisation that are quite mature. Quite culturally engaged and everything else. And other parts which are just starting out. So, you said you are working with organisations that are just starting out. Are there any things that you see in common with those organisations and or are there, you know significant differences because culturally organisations can be quite different.

ELLA:

Yes. I am currently, great question, because I think actually off the top recognising that language is really different, country to country and I know here in the US, we like to think everything we are doing you know above the Meridian line is the best in class. But I think we have a lot to learn from our colleagues from all over the world, to recognising the way in which language is used, is really one of those key points. And ultimately, how disability is identified is an another one. I think one of the interesting kind of synthesized feedback I've received, is people still are really uncomfortable within their own disabilities, in the global south, right. And I've done a lot of work internationally to recognise that and look across the world and that's my dog. Across the world.

DEBRA:

Joining us, hello.

ELLA:

Yes, right. Big chocolate lab. But I think really, it's thinking about how to do we create a culture that culture of inclusion, to inform the systems, but ultimately get everybody on the same page. So, that really starts with somebody like me at an organisation that let's say, does have multiple different offices across the world to set and lay the foundation. But ultimately, get the CEO to buy in or get the President or the Executive Director, to lay that foundation and champion it. You know, there are quite a few studies out recently and we'll call our friends at BCG, who have done that work with 20,000 different organisations to say yes, our leadership thinks we are doing a great job. The employees don't feel comfortable identifying, don't feel comfortable coming forward, for fear of retribution for fear of kind of being labelled as an outcast. So, there is quite a bit of work that needs to be done there. Again, through that cultural model shift, to really think about how to set the groundwork and how to set the foundation so that people feel comfortable at work and doing their jobs and that's in every office. So, at an expansive lens, it's going to require quite a bit of gap analysis, to be able to determine what steps need to be taken to really make people feel included and comfortable.

DEBRA:

Can I come in really quick and say, Ella, that I know there was some informal research done where we talked to a lot of CEOs and as they did this, three out of four of the CEO's actually identified as being part of our community but did not feel comfortable themselves coming out. So, I know at Billion Strong, we are very focused on identity acceleration for our community. And so, I love how you're talking about it too. And we also see people like, some real high-level leaders talking about it from these frames, as well. So, I just wanted to say how much I appreciate, the points that you just made. Sorry, to take the mic before you, Neil.

Ella:

No problem.

ANTONIO:

No, it's a very, it's an interesting and challenging topic and like you were saying, Debra, many CEOs are not comfortable and when CEOs are not comfortable, it means that HR is going to avoid the conversation. It means that HR is not going to create the space, where employees are going to be able to feel comfortable in talking about it and they prefer, even to avoid talking about accessibility or disability at work or even talking about their needs. But, sometimes, a big mistake that I see, entities doing is, is not just in this case, is also, when they go into big change management information is when they don't listen to employees first. When they don't have the ability to, you know, to reach out. You know, sometimes they do this centrally. They listen the employees in Seattle, but don't listen to anybody else. But when they are able to listen to everybody around the world, they are able to go into local communities at work and able to understand the feelings and the emotions of the employees. They are in the better situation and then to start to realise, how can we really do things. But when they come from the top down, sometimes there is a clash between because you are being told not to talk about this. You are afraid. And suddenly you're being asked and between you don't really know, okay, I'm going to talk about my disability but I'm going to talk with someone in the United States or someone in Europe, but I'm not going to be sure if my Brazilian office is going to be that happy if I talk about it. So, I think that we face a number of challenges and something that we have been talking recently and between myself and Neil and Debra are you know, why sometimes CEOs are so silent in talking about this. We very rarely see a CEO talking about disability at the conference, at an event. They might talk about diversity in the space of gender, diversity or ethnic diversity, but we very rarely see them comfortable on stage talking about disability. So, it's a great response, because I think this is not something unique to, you know our community. It happens across communities, right, which is for the US, for example. It took a lot of really harmful and polarising politics, in order for the CEO to reach out to the black community in the US and say something. And so, that kind recognition does go for miles, but again it is not unique to this community. To your point about getting by and getting collaboration and getting feedback from every level of an organisation, I've seen this with clients who you know, have had CEOs that have not necessarily been forthcoming with addressing the disability community and 400 members of an ERG and play resource group showed up, knocked on the door and said we are here and we'd like to talk. So, there is power in numbers. And I think that is one of the key points of this strategic work, is to identify who your entire team is. Who are the day-to-day operators. Who is going to go out and be that individual contributor, across those eight different tentacles. But ultimately, who is going to be the lever of change and what kind of organisation is it, within your own organisation or your own company. Your own nonprofit. That's going to shift a needle and shift a perception. It really took 400 people and an entire ERG community, from across the globe to come in and make a shift and to make that really recognisable to the CEO. You think an another really good example of a potential strategy to use, in this equation, is something called an IDI or in depth interview and making sure that you're cultivating all of those interviews, to inform a strategy or to inform an accessibility policy, to inform, you know, international day of person's with disability launch or whatever it might be. But those are really important tools to take in, as you're developing anything new for a community that, again is really polarised, right? We think about disability and all different parts of the spectrum. But coming together and finding a north star, for what north star for what consensus is, it's still really a big challenge, at least I'm seeing every day, within the groups and people I'm working with.

DEBRA:

Ella, I know that Neil wants to come in. But I just want to make one quick comment. Just to make sure nobody gets confused. One thing I do think that is dangerous if there is only one person at the company that's driving this. And I know you're not saying this, I just want to make sure that the audience doesn't think that's what you're saying. Because what we see is sometimes these, and I'll make Neil, Neil is a superhero, ATOS is so lucky to have Neil and sorry, his team. But the reality is if Neil, left and it had not been built in the process that you're going to lose everything that you gained, corporation brand. So, I just wanted to make that quick comment and I know Neil also wants to come in.

Ella:

Okay, we have got the foundations and above, we are above ground, and so, should I get run over by a bus tomorrow, you know, it wouldn't all disintegrate. But I wanted to kind of follow up on the stuff about consultation and you know, the whole process of sort of having that conversation with employees because I think that, you know, you mentioned BCG and their survey, which then informed the report that Hilary published, which I quote all the time, around you know self ID and so on. But I think that quite often when organisations implement change programmes, they frame the questions in a way, so that they get the answers that they want to hear. And so, the way that we ask the questions has to be open enough that we actually get answers that are meaningful because I remember, you know, one particular survey and it was saying, you know, I agree that you know, I'm not discriminated against, on grounds of raise, gender, disability or whatever and they were asking various different things. And you know, people were celebrating 85% of people with disabilities, you know of the organisations felt that they weren't discriminated on grounds of disability. And well, that probably means 100% of your disabled staff do feel that because the way that the data was presented. So, I think that there is that too. Because you know, if we really truly want to listen, we have got to ask questions that elicit really good meaningful answers. So, I think that that is a challenge to management, around the globe, to be brave enough to ask some open questions.

ELLA:

And have the integrity to write them in a way that isn't a leading question and I think that's the beauty of IDIs, which is they are open ended. It's a conversation like this. And when I think you can open it open as a conversation, you probably are going to get a lot more than you bargained for. But that's a good thing to know, right? You're spotting where the boat has holes. So, that you can plug them and make them better and sail along a lot faster.

Ella:

Yes, absolutely. Antonio, I know you have got a question.

ANTONIO:

So, and another element I think is important to bring to the discussion is when organisations you know, start to get excited, about it, the topic, some organisations, don’t really have the support mechanisms for employees, to do their jobs. And some of them are excited about oh, the conversation is happening. But, in many situations, they are still the ones carrying the costs of tools and some of the things that they need to, so how we make sure that this conversation also goes in pair, with conversations about accommodations.

ELLA:

It's a great question and a tough one because I don't work in HR and accommodations seems at least again in the US, it seems like this never-ending challenge of variable and this is not my personal believe. But these teams that I'm reading about all the time on you know, online are talking about how some things or certain things aren't an accommodation, right and it's really interesting how we have developed this form of amnesia after the pandemic. I mean, we were all able to do what we are doing right now from home and then apparently home is no longer an accommodation, right. So, it's a really interesting conversation to have, especially looking towards the faux paus that the executive from Zoom said hey, we need to go back to the office. I mean, talk about a moment where I don't know if that necessarily matches your brand story, but okay. So, I think it's actually really pairing what your story is and your core foundations and your core values, as a company, to some of those accommodation requests. Hey, your company, this company, this organisation says the core value is creating an equitable work environment so that everyone has too opportunity to participate, while they are here at work. While that needs to follow up and in line what your HR and accommodations policy is. I think the really great phrase I've heard for accommodations is calling it an access requirement. So, it's not an accommodation, something we are providing you, it's actually a requirement for me to be able to show up in an equitable way. So, really like that kind of language which is forcing accountability on a company or an organisation or a HR team rear than saying this is something we are gifting you. A couple of organisations that I think have done it really correctly for again, specific populations, specific disability communities. Amazon, I know has gotten a lot of slack recently on some of their work, but what they have done, in the sense of hiring interpreters for every single deaf employee, is really phenomenal because it's, you know, a nominal lift to hire that employee. But it means a world of difference for equitable and economic opportunity for deaf people who want to work in Amazon that have never thought that that was a possibility and so, some of that, think ultimately does weave into these brand stories that can make a difference. People can learn, other organisations that can learn from those kind of companies that say these are something want to do of 300 or 400 people show up at the CEO's doorstep, they can point to some of these case studies and say, look this is what your competitors are doing. Doesn't this make you feel a little like you need to be on the next cusp or the next iteration of this work because your competitors are doing it? And so, I think again, it's identifying those levers of change that is going to shift a needle. If you don't, yourself hold the rein, or the power mechanism. So, I think it's being able to use the right kinds of communications tools to ultimately shift a perception.

Ella:

Yes, I think Debra was saying, good point.

DEBRA:

Yes, sorry, I am muted by yes, I love everything. I totally agree. I totally agree because you know, if a CEO, just using one person, once again, if a CEO was a leader, I'd rather say a leader. Really wants to lead in these intense troubled times. Just be authentic, come out. Help humans do better. Help us. There are so many things that we could do to take all this wonderful technology we have at our hands now to really experience something amazing, including protecting our planet. So, I love everything you're saying and I love how your work has shifted as well, since last time I was looking at what you were doing. Because I believe this is way forward. Working together, holding each other accountable and really celebrating who we are. So, I just, thank you Neil, for letting me come in. I really appreciate your words.

Ella:

Pleasure. So, when we talk about what we want to do. So, we don't actually talk about accommodations, certainly not in the UK. It's very we talk about workplace adjustments and we don't actually talk about necessarily disability and our programme talks about enabling everyone to contribute their best. And so, it's implicit but also, you know, we have multiple different strands to our work, so, yes, we need to provide accommodations. That's about being an effective organisation. If we don't do that, then people can't work effectively, whether that be working from home of have the software that they need to do their jobs or even just, simple things like a comfortable chair or a decent set of headphones, because those can be difference between being able and empowered to do your job and struggling and not coping and falling behind. So, I think that when we talk about it, in terms of organisational effectiveness and enablement, and so on, and you know people buy in, not all people. You know, we still get the idea of chair envy. We still get the idea that, oh you know, well, if we make it available maybe they'll take it or maybe if we make it available, they will be more effective. So, I think that there is still you know, still some resistance to a very open approach to this, within organisations and that that is driven from a fear of spending money. Rather than a fear of, you know, there is again, a sort of a famine mentality when it comes to sort of disability inclusion and actually, when you take a mentality of actually this is an investment. And you will get a really good return on investment. And don't quote Jenny, from saying, don't ask me for the ROI. I think there is a good ROI and I think that what we want is for that not to be BS because there is an awful lot of BS figures, out there. With which is what Jenny was alluding to. But there are clear metrics and I think that as reporting gets better and corporate reporting is a really big thing. Then we are going to get much better at showing the ROI of doing some of this stuff.

ELLA:

And on corporate reporting, I think some of the most impactful work that I've been able to touch, in the last couple of months and years, is around ESG and how we are weaving that narrative of disability inclusion. And accessibility for that matter, into RVSG corporate reporting structures and our principles and our performance standards. Those are things that have enormous potential. But I think beyond just that, it's how do we get out of our own vacuum here; right? We are a really tight and small community, but we need to bring in others and we need to also train other people and other parts of an organisation to understand it. Maybe self-identify and then also take the baton forward and carry it. One of my new favourite quotes is from the bumble CEO, who recently stepped down and passed over the baton who said this isn't a sprint, it's a marathon but it's also a relay race and I am passing the baton to the next woman in charge. And so, I think we also can take a lesson from that and see how we can continue to pass on batons to other members of our community, to younger people, to more diverse audiences that have very intersectional experiences because often, when I am at these conferences or attending different meetings around disability inclusion, we are not seeing a diverse enough set of people up on stage and talking about their work, which ultimately probably means there aren't enough diverse people within the disability community having these conversations or invited to have these conversations. And so, if that is a goal of mine in the next couple of months, it is bringing people in and bringing them up that have been marginalised from this community and from these conversations.

Ella:

Just, absolutely the right thing to do. Thank you so much for you know, a great conversation. Clearly there is loads more topics. I mean, you just, in the last couple of minutes, you opened up probably another two podcasts worth of stuff there. So, I think we'll definitely want to have you back on. But I also need to thank My Cleartext and Amazon, for keeping us on air and keeping us captioned and accessible. So, thank you, Ella it's been a joy talking with you and we look forward to continuing the discussion on social media.

ELLA:

Sounds good. Thank you all for having me. Have a good weekend.

Authenticity and Inclusion in Accessibility Work
Employee Feedback & Global Listening in Change
Challenges and Opportunities in Disability Inclusion