Envisioning Disability: The Need to ‘Justify’ My Dad’s Identity

David Ellis reflects on the unspoken judgements around disability

‘Can’t you see I’m struggling?’ he asks, after having spent the last few minutes fumbling with his coat’s zip. He would have accused me of interfering had I helped sooner, but now having waited, I’ve been accused of watching him struggle. This was perhaps the earliest lesson I learnt from having a blind and deaf father; there is not always a ‘right’ response to disability.

That question plays a large role in my understanding of my dad. He uttered it out of frustration with himself, with his life, with the world around him, and there was nothing I could do other than be there when he needed me. But this was not a strenuous task, indeed it was no task at all when I was young – it was the world as I knew it. My dad began to lose his vision and hearing soon after I was born, and it had almost escaped him by time I began to understand the world around me. I can only imagine the torturous nature of having the world slowly become closed off to you whilst having your son enter into it for the first time. But this tragic transition of lives somehow balanced one another: I was being raised in an environment which was itself newly changing and adapting for my dad’s new life.

This makes it difficult to explain what it was like to be raised by a blind and deaf father, because, simply put, I never knew any alternative and didn’t have cause to judge it. I simply accepted the reality which I found myself in. But while I had no difficulty with my dad’s circumstances or my childhood, other people did. Friends, teachers and parents alike struggled to comprehend the reality of my circumstances. If you want to know what it was like to be raised by a disabled dad, then you need to know what it was like to experience having that question repeatedly asked of you.

My dad’s condition was an inescapably dominant factor of my family and upbringing, but it did not stick out to me as a ‘thing’, after all, I never knew otherwise, until someone else forced that difference upon me. It was less the condition which influenced me, and far more the shocked response of those who heard about it. Some childhoods are defined by an event such as the birth of a sibling, but mine was defined by a question: “What is it like to have a blind dad?”. Not that anyone really asked it, of course. No one wanted to cause offence and the question was so obviously burning their lips that they and I did not need to hear it in order to know that it had already been asked.

But what exactly has been asked? Did people want to hear about the importance of not changing the order of my dad’s belongings so that he knew where everything was by memory alone? Did they want to know whether my dad knew what I looked like? Did they want me to list all of my childhood experiences, especially the rites of passage, for them to then play ‘spot the disabled difference’? In truth, the news of my dad’s condition would stop a person in their tracks. They would stutter, pause, and watch me with expectation as the question lingered in the air, as they realised how little they knew about what this child was saying. It felt like I was the materialisation of a mythical character from an ancient though prevalent legend. Although I was not blind and deaf, I was inseparable from my dad’s condition in virtue of him being my dad. It therefore fell upon me to help them make sense of what I had just said.

Telling someone that my dad was blind and deaf was received as if I had presented a paradox or told a joke with the punchline missing – it was now my responsibility to resolve the confusion, it was now my job to explain the terms of the matter and then justify how it is a joke.

I am often unwilling to elaborate because the question generally springs from a prejudicial origin. This is not to say that no one asks with good intentions, or that people cannot be curious. But it is to say that the majority of people have no firm idea what disability is and attempt to understand it in terms of a value-comparison. Sometimes we say that people have ‘preconceived images’ about disability, but we must be cautious with this phrase despite its intuitive appeal. In my experience, it wasn’t that people had preconceived images of what my dad would be like, it was that they couldn’t even begin to imagine it. When hearing about his condition for the first time, people often assumed that my dad struggled to be a dad rather than my dad happened to be blind and deaf. This reveals at least two components of unconscious prejudice. Firstly, their ignorance of the reality of disability meant they understood it to mean ‘incapable of doing certain things’. This creates a negative narrative of disability as a disadvantage, a discomfort, an undesirable trait associated with hardships, struggles and failures. Secondly, disability becomes intricately associated with the individual’s identity. Despite the truth of this – a disability is an integral aspect of a person’s life – the negative value-judgements come along as baggage, seemingly spoiling other aspects of the individual’s identity. In my dad’s case, this was his supposed incapacity to be a dad, and they would apologise about it.

“Oh, I am sorry to hear about that. I can’t even begin to imagine what it was like…”. But what exactly are you so sorry about? You are not apologising for having done something wrong, unless you think that raising the topic has upset me, but if so, it goes to show the same point I wish to make anyway. People apologise about this in the same way they apologised at his funeral – it was in condolence. To them, blindness and deafness undermines an integral aspect of what it means to be a father; it robbed me of my childhood and robbed him of his identity as a dad, and they were sorry to hear of it. An alternative explanation may be that people feel pressured to respond but are unsure how. Ignorant of disability, they have nothing constructive to say, and resort to apology rather than silence. Although I am sympathetic to this, it nonetheless makes me uneasy. It feels like I have inputted incompatible data into a computer, causing it to lag and eventually crash, prompting an apologetic error notice to appear:

“Sorry, does not compute”.

So, although the individual does not mean to cause offence and are perhaps not judging me directly, I nonetheless find myself in a situation where I am akin to a glitch in a social system. I cannot help but feel out of place because society struggles to find a place for me.

What does it really mean to be a father, mother, or any parent, and does it necessarily require vision and hearing? It is beyond doubt that seeing and hearing your child matters, but why does it matter? Is it important to see your child as a collection of animated body parts, or hear them as a sequence of oscillating sounds? Of course not, and to even speak in this way is to miss the deeper meaning, indeed point of seeing your child. When you see your child, you do not see mere matter, shapes and movement, but rather meaning, purpose and progress. What it means to be a father does not exist in the world to be seen or heard, but lies deep within us, and if anything, having my dad almost closed off from the external world only emphasised the importance of what exists within.

Dr. David Ellis is a Lecturer of Philosophy, Ethics and Religion at Leeds Trinity University. He researches the overlap of religious language, belief and experience, and can be contacted at d.ellis@leedstrinity.ac.uk and at Twitter @David_Ellis95

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