Imagine a world you can neither see nor hear, yet you must find a way to grow and thrive within it, feeling your way, using the senses you do have to understand it.
As the parent of a Deafblind child, your challenge is to help them learn to do this, which takes perseverance, imagination and determination to reveal and translate the mysteries of the world to them. And as they grow, you must also facilitate their learning of how to navigate their daily life for themselves, as much as they can.
This is a challenge Elly Chapple has been lovingly engaged in for over a decade with her daughter, Ella. Elly writes a blog, Can Do Ella about their journey together and how they learn from each other. Today on SNJ, Elly talks about her desire to #FlipTheNarrative about how we think about learning and take the time to look at it from a new, deeper perspective.
Learning to hear what Deafblind people have to teach us
by Elly Chapple
It felt a bit overwhelming being asked to write for Special Needs Jungle – it’s been my go-to bible for SEND for a long time. I thought about what might be useful to share with you about our journey to #flipthenarrative and what you might like to know about Deafblindness, as it’s not often an area of discussion in our world, yet there are some remarkable children out there who need to be heard – they teach us in a way that is both unique and yet so transferable for many and also very powerful.
Our daughter Ella, was born with a rare syndrome and not diagnosed as Deafblind until she was aged seven despite being congenitally Deafblind (from birth). You may have heard of Helen Keller and her pioneering teacher Anne Sullivan or recently watched BBC 2 Icons and her story. It describes that ‘Helen Keller’s life was defined by what she could do’ despite being Deafblind and how her work helped shape a path for many disabled people.
We’ve certainly walked the difference between a child being setup for what they can’t do and also what they can do and it is entirely possible to achieve well beyond expectations when you have the right approach to your education and are taught and surrounded daily with belief and high expectations. You may also have heard of Molly Watt who is a modern-day advocate for many and her achievements are testament to that approach and her work within accessibility, Usher Syndrome and inclusion at such a young age is nothing short of outstanding.
Deafblindness is when the incidental learning senses of vision and hearing are disrupted and the ability to learn requires an experiential approach, that is rooted in deep understanding of this unique disability. By ‘deep’ I mean not just theoretical knowledge, but person knowledge.
The Deafblind world is sometimes classed as a small world, but I can assure you we don’t see it that way. It’s part of the whole world like any other. It’s a label that helps with identity, but it isn’t the whole person or the whole story. People who are Deafblind are human just like the everyone else, they have a rightful place within society just like anyone else.
There are currently approximately 4,000 children in the UK who are Deafblind or Multisensory Impaired (MSI). It’s a tiny portion of the population here and worldwide, the recent World Federation of the Deafblind report approximated:
‘Representing between 0.2% to 2% of the population, persons with deafblindness are a very diverse yet hidden group and are, overall, more likely to be poor and unemployed, and with lower educational outcomes. Because deafblindness is less well-known and often misunderstood, people struggle to obtain the right support, and are often excluded from both development and disability programmes.’
WFDB Report 2018
So, it’s a minority like many others, and often hugely misunderstood. It can be very hard to find the right support and understanding, but it also has a network of strength and passion with phenomenal people involved. The families, like others, work hard for inclusion and equality for their children.
Every day is a learning journey
The right support is critical within education as for any child, because it is a learning journey every day, all day, for Ella and her peers, finding their way in our visual and super-fast world. You need several very important things to facilitate an environment that is inclusive for a child who is Deafblind and most of these would work for many children:
- Time and patience (a lot of it) and that isn’t patronising, it’s about you being able to apply your own brakes and bring to the space a calm centred self
- The ability to experience everything to be able to learn it: using touch, smell, taste, and any residual sense – hearing or vision
- Doing with the child, not to or for (McInnes & Treffry, 1982)
- Treating children with respect, dignity and equally. Believe me, they know if you don’t.
- Have high expectations. Because they also know if you don’t.
We have been privileged to have a great teacher at our side for a long part of our journey since Ella lost her vision five years ago. Having someone who believes in your child and their ability is worth its weight in gold and holds you up when you feel it might otherwise be an uphill struggle to keep the faith and belief there. Nicola, you know who you are, I am grateful daily for that belief and the teaching and passion you bring. It pushes us out of our comfort zone and into Ella’s shoes. It reminds us that to learn how to be of assistance, we must remain in constant touch with the real, lived experience. Theory is a wonderful thing and supports so much, but to apply that well takes humility, constant reflection and an ability to bravely follow the child and what they are teaching us too.
Observation and reflection
There was an interesting discussion recently on Twitter around children’s interests/obsessions, which got me thinking about narrative again, and what we bring to that when we observe. When we really observe and not necessarily through the lens of educating. Just through the lens of being, with the person in the space (if you’re invited), and reflecting upon the interest and what they are doing and ‘why’ – what do you learn from them? People are inherently different, we all have different interests and differing things that we like to do. Not everything is about something, sometimes. There’s a state of being that I think we can overlook in a world that demands a reason for everything.
When we talk about children with an obsession, sometimes we might actually be referring to an interest. Something that they want to investigate, until they are happy with what it is, what it does and why. I often watch my young nephew who plays with so much imagination and interest while clearly having a huge conversation in his own head and the gleeful freedom that he does this with. Often, we lose this precious authenticity of being and investigating. The older we get, the more aligned we become with societal norms or are expected to align with.
Nancy Gedge wrote a stunning blog about what it is like for children to have a sibling with Down Syndrome: "The presence of a big brother with Down’s syndrome allows you to be young, to be who you are, a mixture of heartbreaking innocence and slow awakening, to take your time in growing up." Enabling children to play a little longer and be a little longer. The pressure is off, but not necessarily because of the needs of the person with disability. In that space you can be freer, because they are less trapped by dogma or the expected route.
It resonated so deeply with me. Ella has enabled our younger children to be, and to be, longer – life hasn’t had the speed that it might have done and I am wholly grateful for the brakes she applies. Slow down. Take your time. There is no rush.
Repetition and exploration
95% of our learning transmits though the eyes and ears, so the statistics say. And of course, we live in a very visual world too. If, like Ella, you have a sensory loss in both of your incidental learning senses, then you really do need the time to be and the time to also learn. Repetition is your friend – second to time; time being essential to be able to repetitively learn and explore.
I remember clearly when I watched Ella for a period of nine months repetitively work her way through the box of shoes at our front door. It’s a crate, nothing glamorous, but boxes are helpful for things having a place when you can’t see. She would sit daily, twice a day, prior to going anywhere and go through the entire shoe box, mouthing and feeling every single one. Laces, velcro (a favourite), zips, leather, suede, fabric, different sizes, smells and shapes. Something so simple, in my mind or yours, yet she would return to this daily without fault, twice a day.
I can also remember a professional suggesting this was ‘obsessive’ and it just didn’t sit with me that it was. Perhaps in a momentary observation without the whole view, it looked like that. It wasn’t what people sat and did regularly elsewhere. Or would they, if they were given the time and space to? I was fascinated by the ‘why’ and my ears numbed to the encouragement to ‘move her on’. The team and I knew that she was doing what she needed to. That without eyes, her hands had to work out every inch of every shoe and categorise that so by light touch she would know what we saw with our eyes in seconds – shoe, shoe, shoe, shoe. That had to be confirmed through touch, touch, touch and sometimes sound and smell.
After nine months, one day she simply put the last shoe down, turned from the box and stood up. She sat down in her chair and promptly said ‘boots’ and indicated to her foot.
It was like a lightning bolt for me. I got it.
The ‘shoeness of a shoe’ was complete. She had spent nine months learning every possible combination of ‘type/style/smell/size/owner’ of shoe until the concept of that had embedded. When it had and her hands could delineate the shoe by touch, she was ready to put that one on her foot – solid in her knowledge that this object made sense, and the concept was clear.
#FlipTheNarrative
It's often in these very simple acts that some of the deepest learning is happening. It just isn’t what we might perceive how it should be learned. But we are not them and they are not us – and if we are to remain together as a whole, one, humans, then we need to #flipthenarrative and reframe our thinking. We need to take the time to reflect about our assumptions and give pause for thought and time for space to be and understand what our children are teaching us.
‘Twenty new children to read, to decipher, like twenty new books written in a barely comprehensible hand, like second-hand books with missing pages.’
Janusz Korczak, 1939
In those spaces, in this mad, busy and rushed world – magic is occurring every day. Don’t miss it, don’t rush it, just trust in it, believe in it and let our children open your eyes a little wider and your mind become a little broader. Otherwise we are in danger of missing things that educate us about them and ourselves by default. Try it, be a little braver, trust in your instincts and that raw smattering of childlike authenticity that we all had once. Just because we grew up doesn’t mean that we should shut down our minds to the possible and the very simple. Often through that lens we learn the most. C
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Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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