Five Years On

It’s been almost 5 years since I wrote my first blog post (Assistive technology: beyond the device) as co-director at access: technology.  Part of our big birthday celebrations this year have been (aside from some really delicious Greek food) reflecting on our journey as a company, as practitioners, as human beings and making plans for our future.

When I read back my first blog post, I won’t lie,  there was definitely more than a tinge of cringe.  My initial words were “Crikey! Let’s delete this; this doesn’t reflect my thoughts anymore!” Alright,  I may have used something a little stronger than ‘Crikey!’… but nothing gives a more accurate benchmark about the distance you’ve travelled than drawing comparisons between your thought processes over time.   Rather than hit ‘delete’, I’ve decided to reflect on what I’ve learned, because it’s responsible for so much positive change. 

SO, here we go, five things I’m glad I’ve learned in the last five years:

What AT really is.

Five years ago, I felt I knew the potential power that assistive technology (AT) had in education. My background in teaching meant I could get excited and rave about software, devices and set-ups that enhanced learning; I also had a sound knowledge of the ways technology could be used to support communication. Realistically, however, compared to now – pfffft,  how little I knew(!)

I have an incredible team. I know everyone says that, but honestly- mine is genuinely THE best.  They’re ‘client first’ (which always makes for success), innovative, creative, reflective, dedicated and frankly, down right lovely humans.  Being on their team has taught me so much.  The solutions they have developed and the collaborations they have had with other outstanding professionals have enabled people all over the country to change their lives and achieve their goals.

I knew that AT was far more than just a device or a technical solution five years ago. However, now I know that when you combine the right AT solution with the right support, AT is playing, learning, reading, writing, calculating, participating, creating, communicating, talking, interacting, sharing, exploring, advocating, organising, managing, achieving, controlling, connecting, reflecting, choosing…… well, it’s living isn’t it?!    

Five years ago, I thought we had done a good job when I witnessed or heard about a client using the tech we had recommended, as independently as possible to achieve a desired outcome.  These days, I’m past that, I’m gunning for the moments that my team and I may never witness.  I’m pushing to make myself and my staff team redundant.  I’m bursting with joy when no one cares or mentions the use of AT any more – because it isn’t special, it’s  just our client living their life.  I aspire for boring old Wednesdays, they’re my absolute favourite.

Our education system is even worse at preparing our young people for adulthood than I thought.

I’m a teacher by trade, I used to think the education system was my jam; I’ve royally discovered it is not. The failings of the education system are, in my opinion, too extensive, obvious and predictable to write a succinct paragraph on, so I won’t attempt to here.  In short, if you’re a lucky young human, you might get through your schooling relatively unscathed, if you’re unlucky it can destroy you.  I meet very few (I’d probably argue any) people for whom our education system is optimal.  I question its purpose in every possible way.  Our team spends a great deal of time working to try and reduce the incidence and the ways in which our clients are restricted, penalised, isolated and upset as a result of their education and school experiences. We experience varying degrees of success. This makes me grumpy.

Why am I glad to feel this? Well, because I can see it and recognising where our staff team might need to place themselves and their support allows us an opportunity to affect positive change. I see it, I talk about it with other people, I know that other people see it too, this is reassuring and creates a glimmer of hope that things don’t have to stay this way.

*Disclaimer: We work with so many really amazing education professionals, teachers, learning support, SENCOs,  who are absolutely dedicated, sacrificing their own lives and wellbeing to improve the quality of life of the young people we support.  We see you, we celebrate you, we love you!

Image: AT Ambassador Al Haigh (left) and client Jack Taylor (right)

Who the real experts are.

It absolutely is not the people who tell you they are.

The people we work to support and empower are the experts.

We’ve discovered that we have a secret weapon; our AT Ambassador Al was/is a client of ours, and his journey, successes and insight are extremely valuable to us as professionals and our service as a whole.  When people aren’t listening, when we need to send in the big guns, we give Al a call.  Nothing has been more powerful in securing that all important AT buy-in from families and supporting professionals, than the sharing of personal, real, lived experience.  

The voices of people who have lived experience; our clients and their families have a credibility and power that we will never be able to match or replicate as professionals. I’m excited to further develop our Ambassador role and to seek ongoing opportunities to improve our service and our outlook by creating space to hear the voices of real experts.

The importance of the ‘Golden Bubble of Joy’

It sounds weird, but hang in there with me.  When we first set out five years ago, the three of us had racked up decades of experience between us, working with young people,  families and MDT’s.  We recognised the vibe we experienced when things were working together well in support of our clients and it was clear when they were not… but it was a good while before we could articulate anything other than “the vibe.”

Over the last five years, we have dedicated our time to unpicking and understanding where AT fails. As a service we knew we needed to find those places and provide support. We discovered that our clients did best and AT failed less often when our clients support networks were well equipped to help them. We know now that the recipe for success with AT is a network of interdependencies: human to human, human to tech, tech to human, tech to tech.  When these interdependencies are present, reliable and work in support of our client’s intentions… anything is possible.  We call this ‘The Golden Bubble of Joy’ 

We continue to learn about ‘The Golden Bubble of Joy’ every day, from each client, family and professional dynamic we meet and we actively work to develop and support its integrity. It’s where the boring Wednesdays are made.  It probably needs a posher name.

To challenge and evaluate my attitudes and behaviour towards disability and  to pledge to keep doing this forever.

I have worked with disabled people for the vast majority of my adult life.  I thought I had it down. I thought I was respectful and aspirational, but in reality I was a massive ableist. Without realising, my upbringing, education,  professional training and employment had led me to a belief that ‘typical’ abilities are superior. Although I did not recognise it, and would never have said it, I dedicated years of my life in the quest to enable people to make progress, progress towards the gold standard of ‘typical’. I very ashamedly worked with people like there was a problem that needed to be fixed. Over the last five years, I’ve discovered that the problem was never as a result of the young people I worked to support. The problem was and has always been the attitudes and actions of people just like me.

I read, I researched, I listened, I reflected, I recognised that humans have, since the very beginning of their time, in every culture, religion, society, country been different. That is a fact that has never and will never change. Human difference takes so many forms in varying degrees of deviation from ‘typical’. Humans are born different, humans become different, but realistically it’s an unavoidable part of the human experience. One thing that has changed, and can continue to be changed, is how we respond as individuals, communities, cultures and societies to human difference.  I plan to spend the rest of my life trying to learn more about what it means to be human.

In my first blog post, I wrote about a young man called James (*obvs not his real name), a bright, funny, keen 20 year-old man with downs syndrome, who wanted a job in hospitality. I wrote the words “the only thing holding him back was his speech.”  Who knew my own words would make my future teeth itch?!

If I could rewrite that section now it would look something like this:

“There were countless things holding James back. Many employers and organisations lack flexibility, and have policies, procedures and practices that James may have found difficult to understand, engage with and follow.  Most jobs require an interview,  James would have found it difficult to show a prospective employer his strengths and abilities through a verbal 1:1 conversation.   In order for him to showcase his skills and fantastic personality, James would have required a prospective employer to be willing to offer a practical interview which could perhaps have been supplemented by references from other professionals who have worked with him. Employers who are willing to do this can be hard to find.  Positions within the hospitality sector can be competitive, James may be applying for jobs against people who have the ability to communicate verbally. Employers may value verbal speech over the other desirable qualities, skills and characteristics that James is able to offer. They may also be unaware they can, or unwilling to augment job roles within the organisation to make them less reliant on the ability to communicate verbally.

There is far more funding and resources available to support disabled people to change and behave in ways that could be considered more typical than there is expectation or support for employers to understand how to accommodate human difference. Funding and resources were available to teach James how to use a communication aid. If James was able to use a device to enhance his communication, potential employers would need to make fewer changes to their expectations and procedures to understand and benefit from his skills and abilities.

After two years of following a communication learning programme, James made the choice not to pursue the use of a communication aid. Whilst this decision may impact James’ ability to more easily secure employment, with the right support, there is no reason why James should not be able to find a suitable employment opportunity that he enjoys.”

It’s unlikely I’ll ever get to meet James again, but if I did, I would like to tell him that he is my favourite person to have ever repeatedly and extensively taken the p*ss out of me – without the utterance of a single word. I would tell him that he has the most expressive eyebrows of all time and belly laughs with him were excruciating. I would like to tell him he is perfect, loved and admired just the way he is. If my attitude and behaviour ever made him feel like he was less than – in any way, I sincerely apologise.  I would like to tell him that I know better now, I’m going to keep listening and I’m going to do better. I’d wait for our traditional goodbye: he would roll his eyes and flick me the ‘V’s, I’d check no one was looking and do it back, he’d laugh.