Within every culture there are communities which generate different reactions or approaches throughout wider society. When it comes to people with visible/invisible additional needs/challenges, in my wealth of travels I’ve found cultures range from a fairly relaxed approach to families hiding their relatives with special needs from the rest of society and anything in between.
“I said to my husband as a joke – have I got the one ring on, can I actually not be seen?” Dr Sarah Bryan.
I got the epiphany to write this while on a recent short break to the Greek island of Zakynthos (Zante in Italian). Before two friends and I set off for Zakynthos, I wondered how I would be received as a tourist with a visual impairment – then I remembered how chilled and not-a-problem it was when I went to Spain some years ago, where I knew the culture would be similar to Greece.
It was a dazzling, warm April day, our last of the four-day quicky and it finally blessed us with enough sun to enjoy a frolic on the beach. I had recently become increasingly infuriated and exasperated with the steady diet in the UK of grabbing at me, whether going to the toilet on a train or waiting outside a pub for a taxi where, as soon as I’m no longer a part of the woodwork I hear, ‘can you manage’ as if I’ve ventured out of my seat for the first time ever to walk down the aisle to the bog. Likewise: “How do you do that?” A guy asked when I dialed my mobile for a taxi – I quickly asked how he ties his shoes in the morning. Enjoying the Greek down-to-earth, no-nonsense persona, I was aware on that last day, I had gone the entire time without hearing, ‘are you alright’ in that patronising, all-too-familiar singsong tone. But then it came; as if to shatter the clear blue sky above me, after I had walked solo up then down the beach while my friends sat watching the sea and surroundings, I heard it permeate the tranquility: “Can you manage” a man’s distinctly British voice came out of nowhere. Instantly I was irritated – the holiday was over in earnest. When I reminded him I had gone a whole nearly four days without hearing that tired, condescending reaction upon first clapping eyes on me – a lone woman with a visual impairment, he didn’t really listen, even when I told him I was 56-years-old and I had ‘managed’ up until now. “So, you can manage.” – he persisted, a quick few pleasantries and I quickly walked away. During the break, not a single Greek spoke to me in a patronising tone. I don’t even think it had much to do with the fact my mates were there, as I was spoken to directly.
Every culture has a varied approach and there’s no one-reaction-fits-all as with variations of attitudes everywhere, as Zeba Khan points out in this conflicting account of the ummah (Community of Islam) and its approach to Muslims with additional needs – these cultural conflicts are not unique.
In 2003 I joined an ambiguously described caravan of mainly young German people who were travelling throughout Morocco and further into Africa. Among them were a couple of French people and a guy from Spain. When my son and I first arrived on the remote beach they had chosen to set up camp, after having flown and then taken a 6-hour bus – no one spoke to us for the first hour. It soon transpired that one of the girls in the group said in German, ‘the last thing we need are these people with special needs, we have enough problems‘. There was little accommodating us, while the Spanish guy was alright and helpful without seemingly batting an eye, much of the group were unwelcoming and haughty.
Venturing out one day going to Essaouira, a former Portuguese colonial town – I needed help around and wanted away from the group. I soon met a young Moroccan lad who happily took us around and I paid him 50 dirhams. However, a young Moroccan man from the nearby village connected with the group. As he was introduced to everyone, when he got to me, he said: “And what do you want?” as if to say ‘why are you here’?
Without pigeonholing – it’s true every culture has its own personality traits. I found the young Germans in the group, serious and eventually accepting; the French girl and guy were fairly arrogant, as I had argued with the French guy about contributing money for food, but then there wasn’t enough food shared.
When I travelled to Egypt in 2006 for field researching my dissertation at university, I found Egyptians didn’t give a toss that I had a visual impairment. I was propositioned twice while I travelled with my guide and translator, who were a couple, so the interest in a single Western woman, albeit somewhat lusty, spiced up the cultural exchange.
While researching the Middle East in particular, my area of interest within my International Politics degree, I found cultural variables according to economic status and even gender. In cases where a family was too poor to send their child with special needs to school, a boy would be sent instead of a girl, but this often applies irrespective of special needs. In some cultures, the honour system meant a relative with additional needs might be hidden from society.
Going into Jerusalem and the occupied territories of Palestine, while Palestinians were humble, used to ill-treatment and addressed me along with my guide – Israelis took the same approach I grew up with as a child. As someone said while we queued to buy a bus ticket: “She can go to the front of the line.” – talking to my guide, not me. In fact, very few Israelis spoke to me.
A year before Egypt, I visited the Czech Republic with a friend and my son. I felt treated equally with a post-communist friendly reserve.
Dr Sarah Bryan, a successful entrepreneur with a visual impairment, spoke of her experience on her honeymoon in India.
She said on first arriving, she was presented with a wheelchair – a kind thought, but not necessary. “My honeymoon in India was spent with people thinking something had happened to me and I had had an accident, like my husband met me when I was fully sighted. They would talk to him and not to me, ‘what happened to her eyes, why can’t she see.” People would say. She describes someone telling her, ‘You are so lucky to have someone be so kind to you’ as if not worthy. So pervasive were the psychological effects of being spoken over, rather than spoken to, Dr Bryan explained: “When you’re treated like that after a long enough period of time, you find yourself conforming to that – you find yourself diminishing. I said to my husband as a joke, have I got the one ring on, can I actually not be seen?” – referencing J. R. R. Tolkien’s wearing of the ‘one ring to rule them all’ rendering the hobbit invisible in Lord of the Rings.
Sitting in a workshop this summer at a small festival, there were people in there with various additional needs speaking of the way they were approached by Joe/Jane public. A woman who was a wheelchair user, described how, one day in the supermarket someone just took it upon themselves to rearrange her handbag and pick the can of baked beans right out of her lap and put it on the conveyer belt without saying a word. She was wheeled across the floor from out of nowhere in a pub to make room for another customer. Outrageous! In these respects, the UK is no different than more traditional cultures, such as India, where Dr Bryan spoke of being manhandled by four people into a chair, even though she could sit down independently.
Any given person with additional needs, whether in the UK or elsewhere, will have volumes of examples, negative or positive, of how they are received within a given culture. In my anger and exasperation, I wrote this blog of how in the UK supercilious remarks or deeds are forever packaged as ‘just trying to help’.
Dr Bryan pointed out how in very different cultures one might have to just, to a certain extent, roll with it, yet respectfully challenge that people can function differently for example, when opportunities arise one could surprise a cultural presumption of helplessness. When she got off a boat and swam independently – someone said to her husband:
“Oh, you got her into the water” and he replied: “She got in herself.”
This isn’t to say some cultures don’t highly respect those among them with visible/invisible differences. I like the native American tribal lack of binary between ‘normal’ and abnormal. The philosophy, even to this day, recognises those with physical or mental challenges as Heyoka people – possessing specific powers, contributing to the community – sadly, this culture has been mostly annihilated. Likewise, in Middle Eastern cultures, people with what are considered disabilities are strived to be enabled, rather than dis-abled. However, the above source points out 25% of any population will have additional needs of some kind, as 80% within the majority world live in rural/isolated areas. There are large swathes of poor/majority world countries which have no provisional services at all – especially within education.
Dr Bryan dubbed the streets in India as a free-for-all with people, cars, cows and no pavement, so it would be impossible for her to walk with her white cane or guide dog.
Just before the discussion broke up in the workshop at the festival, I said: “I’m sure it’s all getting worse.” Referring to the grabbing or gratuitous steady diet people with additional needs face and someone said: “It’s just the way people communicate with each other now since covid.” I thought to myself, that’s a bit lame considering all the culture wars, unravelling of human rights and political polarization going on in the world.
It’s a fact throughout history that people everywhere who have additional challenges have had a raw deal. In the West there have been huge progressive strides made with anti-discrimination legislation, awareness-raising campaigns and so on, but at grassroots level it’s still patchy. We can all count our lucky stars we’re given the safety net of the benefits system to compensate for lack of equal opportunity within the workplace or broadly speaking, priority in housing and other public services, but in my robust opinion, the best place on the planet to have additional needs is my country of origin – the good ol’ USA and continental Europe. In the US, I was able to go from one job to a better job and then a better one. It was never perfect, but as a rule I felt respected as a person and appreciated for what I could contribute. It wasn’t until I immigrated to the UK that I was branded ‘dis-abled, grabbed at or routinely patronised to the point of being put off going out – affecting my mental health. Like many things, the UK has a hell of a long way to go before it’s better and, if it weren’t for my son and his complex additional needs I’d be on the next plane to Spain – just saying …