Our global Perspectives blog is an interactive way for everyone to join in the diversity and inclusion dialogue. It provides insights, opinions and experiences and encourages discussion, debate and a sense of community.
Since launching Perspectives, we have published more than 200 blog posts from people sharing their experiences across a range of topics. See below for a selection of them.
Care in Perspective, Daniel Franks, London
What Black History Month means to me, Shirley-Ann Hunte, London
Planning a holiday abroad with a disabled child, Robin Williams, London
(Wo)men’s work, Alexandra Howe, London
The importance of family, Shiv Daddar, London
Banter, Jack Mason, London
Care in Perspective
Daniel Franks, London
When I was asked to write a blog for Carers Week, I felt a bit of a fraud – after all, I'm not a primary carer. Then I remembered something I had heard at a talk for parents of children with special needs – it's not just the child who has special needs, but the entire family. With a five year-old daughter who has an extremely rare chromosome disorder, I am part of a special needs family - hopefully that's sufficient qualification to write for Carers Week.
For those of you who know me, I'm a private person (more on that below), so writing a blog about this doesn't come easily. Anything I have to say is, by definition, personal; others, even those in similar situations, will view things differently. But that's part of the reason for writing this – for many, there are few ways of letting the outside world know what it's really like to be in this situation. So hopefully this gives some insight into a world about which, five years ago, I knew very little.
So here are a few things that are probably not apparent to those who are not in a similar situation:
- The feeling of guilt that comes with being a parent of a child with special needs cannot be understated. Guilt that I leave Lauren (my wife) to deal with the brunt of caring responsibilities, while I am having a ‘normal’ life at work. Guilt at having to make difficult choices for our own sake and for the sake of the broader family – like taking a family holiday without Sophia, so that we get a break from caring responsibilities and our other kids get a ‘normal’ holiday without our attention being constantly diverted. Or attending family functions without her, either because access is limited or because she simply wouldn't handle the social situation well. So ‘family events’ aren't family events at all.
- I have a newfound sense of admiration and appreciation for Lauren. I can't help but admire the way in which she deals with things, with a strength that I couldn't muster personally. Her diary is filled with appointments (doctors, therapists, the school, the local authority….), so it's a full time job in its own right. Yet she does it while being a working mum.
- It's exhausting, both physically and emotionally. The physical strain of lifting a five-year old who cannot sit, stand or hold on to you (it's basically lifting a dead weight). The emotional strain of being on duty all the time – unless Sophia is actively engaged by an adult, she is unable to occupy herself. And if she's not occupied, she will make enough noise to let you know! So it's impossible to get anything else done. And then there's the sleep deprivation (complex special needs kids often have sleep issues – think of a newborn's sleeping habits and apply them until adulthood and beyond).
- There's a mixture of pride and heart-break seeing Chloe, Sophia's elder sister, handling having a disabled sibling. As well as putting up with the attention that Sophia gets, she has witnessed more than a nine year-old should. Watching your five year-old sister have epileptic seizures, being carried out of the house by a paramedic and whisked away in an ambulance must be frightening beyond belief. And she misses out on a ‘normal’ life with a sibling with whom she can chat and play.
- We're fortunate to have the support of our nanny, who has years of experience working with children with complex difficulties. She has achieved so much with Sophia and, time and time again, shows what Sophia is capable of doing. With that, though, comes a sense of failure - that we as parents are unable to nurture our daughter in the way that others can.
- Despite being fiercely independent people, having a special needs child means that it's impossible to handle things alone. So we are reliant upon the help and support of our families, for which we are extremely grateful (even if sometimes I stubbornly refuse until they won't take ‘no’ for an answer)
- As a fairly observant member of the Jewish faith, I never thought I would end up questioning my faith. But receiving Sophia's diagnosis gave rise to difficult questions – how could an omnipotent being inflict something so debilitating on an innocent child? Despite that, I still count my blessings – there are many families who have things much worse than us, and we are privileged to be able to support Sophia and give her the best chance of reaching her potential. To see her make progress, no matter how small, restores that faith.
- Planning for the future has taken on a very different meaning. We've now got to think about how we will provide for Sophia in the short-, medium- and long-term. There will come a point when we cannot look after her ourselves, and that's a difficult future to envisage.
- As mentioned above, I'm a very private person. Save for immediate family and friends and the odd (welcome) exception at work, people tend not to ask questions about how Sophia is progressing, or even how I am doing. Perhaps it's about the relationships that I have with other people (and their wish to respect my privacy), or perhaps they simply don't know what to say or ask. But being the parent of a special needs child can be quite isolating, as there are few other people who can relate to what you're going through.
Being in this unique position has also made me more conscious of how, despite having made great strides, society still has a long way to go before it is fully inclusive:
- Toilets – a taboo subject, so people rarely talk about it. But it's a massive issue for people with disabilities. The lack of appropriate facilities simply makes routine life inaccessible. Take, for example, aeroplanes. If you need a carer (or two) to assist and a hoist/changing bench, the choice is stark. Either don't fly, or accept the consequences if you do. It's not just planes – standard accessible toilets don't have these facilities. There's an initiative for fully-accessible “Changing Places" toilets, but there are only 1300 of them in the UK. So the choice is either not to leave the house, or to be changed on a dirty floor. (P.s. disabled toilets are designed for disabled people – if you're not in that category, you're probably able to find the nearest standard toilet. Some people don't have that luxury.)
- Language – I still hear people using inappropriate language. Surely there are better ways to describe ideas that you think are ‘retarded’ (you're saying that the idea is so bad that only a person with learning difficulties could come up with it)? Or perhaps it might not be appropriate to comment on where on the autistic spectrum you think someone might be?
- Perspective – it is so much easier to have perspective when you are faced with life's challenges. I've participated in conversations in which parents have said how “horrified" they would be if their child were to become a waitress. Frankly, we'd be delighted if this were something that Sophia could achieve. At the moment, though, we're working on the sitting and communicating.
Despite these challenges, I feel extremely lucky to have the family that I do. No matter what life throws at us, we will tackle it head on, as any parent would do. And all three of our children bring us joy in their own ways. But, the next time that you ask someone how they are and they respond “fine, thanks", realise that their “fine" and your “fine" might be very different indeed.
What Black History Month means to me
Shirley-Ann Hunte, London
In the UK, Black History Month is typically a month of remembrance, honoring those who sacrificed and suffered for the sake of racial equality and allows us to pause and remember their stories, so we can commemorate their achievements. It’s about bringing awareness of this rich culture to all people, irrespective of color or creed.
Black History Month at its best encompasses joy, activism and representation. It’s a time to celebrate the arts, literature and business achievements of people of color. It’s about doing actual work that will make the world better for those coming behind us. It’s about radical self-love for ourselves and our people. Black History Month should challenge us to immerse ourselves in the richness of black culture.
We are more than a people who come from slavery. We have more than one great hero. We have been visionaries, scientists, astronauts, inventors and everything else under the sun. That history is for everyone to know.
It’s about recognizing the sacrifices which people of color have made to make this world a better place, and, more particularly, this place that we call home. It is most certainly more than just a month and should be embraced for the rest of the year and beyond.
The world and people’s perceptions will change only when they are no longer ignorant, or plead ignorance.
Planning a holiday abroad with a disabled child
Robin Williams, London
My daughter Katie was born with a rare genetic disorder called Wolf Hirschhorn Syndrome (4p-). Despite the difficulties that came with the condition, we resolved to give Katie the very best that life had to offer. Including her on family holidays abroad was a major part of that. However, overcoming some of the many challenges her needs presented meant planning holidays with military precision (or at least it seemed that way).
Below is a refined list of the many considerations/action points which had to be addressed when planning a holiday abroad with Katie.
- Suitability of accommodation and surrounding area – wheelchair accessible
- Wheelchair servicing beforehand and afterwards (sand gets everywhere)
- Investigating disability-friendly activities balanced with activities to cater for everyone
- Climate – time of year
- Airline policy and airport facilities (transferring Katie to and from the plane; security restrictions on liquids for her medication)
- A doctor’s letter (fitness to fly and explaining medications)
- Insurance issues/medical cover
- Translation of medical condition and information specific to Katie
- Location of hospitals/medical facilities in resort
- Packing sufficient food and other essentials in case of delay
- Suitable hire car to accommodate a wheelchair etc.
- Disabled access to beach (wooden path on beach – not common years ago)
- Restaurants with disabled access/toilets
- Private pool (safe, accessible swimming – Katie’s favourite activity)
- Privacy to avoid feeling awkward around ‘normal’ families
- Safety in numbers/plenty of helping hands.
- We have many happy memories of family holidays abroad with Katie during her short life and this is of great comfort to us. We all learned a great deal about the challenges involved in taking a disabled child abroad, something that would never have occurred to us previously.
Alexandra Howe, London
I moved to France in 2012 with my husband Andrew to work in our Paris banking team. Andrew gave up his job in London and reinvented himself as a house-husband and writer.
Some people find this strange. They ask what he does with his time now that he is not ‘working’. I wonder whether, if the situation were reversed, I would be questioned in the same way. I think that I wouldn’t. I think people would not find it at all strange that, as a woman, I would choose to do ‘women’s work’.
The first time I completed our family tax return in France, I put myself as ‘Déclarant 1’ and Andrew as ‘Déclarant 2’. Afterwards, a French accountant told me that this was not the right way to do it, the man should always come first. And when the tax calculation came through, I found that they had corrected my ‘mistake’. Their letter was addressed to M. Andrew Doe, with a demand for payment from him of tax on the income that I had earned. Moreover, being unable to reconcile the fact that we are married with the fact that I have a different (maiden) name from my husband, they helpfully renamed me Mrs Doe.
In a sense, this really doesn’t matter, and in a sense it really does. It’s just a small example of one of the casual, everyday ways in which I am reminded – despite the fact I am ostensibly living in an enlightened, free society – that, being a woman, I am expected to play a certain role and my husband, being a man, is expected to play another.
No one has ever stopped us from living the way we want to live our lives, but we have to explain, and justify, why we are casting ourselves against our types. And I can’t help feeling that no-one, of whatever gender or sexuality or race or colour or belief, should have to do that.
The importance of family
Shiv Daddar, London
Each year in August, a number of Hindus, Sikhs, Buddhists and Jains around the world celebrate the festival of Raksha Bandhan. The festival marks the love, bond and duty that grows between brothers and sisters, or other relationships akin to this.
The name of the festival corresponds to the rituals performed on the day. Raksha means protection, whilst Bandhan refers to emotional ties. During the festival, sisters prepare or buy bracelets made of woven colored threads and tie them around their brothers’ wrists. At the same time, they pray for their brothers’ health, prosperity, success and good fortune. In return, brothers promise to honor their duty to protect their sisters from harm, thanking them for the blessings their sisters give them with gifts or money. Families make every effort to celebrate together on this day.
I always look forward to this festival. Whilst I don’t have any biological sisters, I have a number of ‘cousin sisters’ with whom I am as close I am with my biological brothers. Part of the reason behind this is the cultural and religious importance we attach to this special bond. It’s always nice to dress up, get together and enjoy the day (and the food!) and to celebrate the importance of our families.
Jack Mason, London
Banter: a word that no millennial can escape. But what does it actually mean? It is a word so often used (by its perpetrators at least) as a synonym for ‘humor’ or as justification for a put-down joke, that we’ve lost sight of the underlying acts the word glosses over. There is nothing funny about behavior which is sexist, misogynistic, homophobic, or racist. Using ‘banter’ to legitimize such behaviour is laughable in its own right. One of the truest definitions of ‘banter’ I could find is ‘conversation that is witty and at the same time abusive’. Let’s be clear: there is nothing witty about abuse.
Humor is to be encouraged, but people should be aware of, and act receptively to, the sometimes fragile sensibilities of those around them. Calling something ‘banter’ is not a remedy for inappropriate behavior. Such behavior is of marked importance in a workplace, not least because of the risk to one’s own professional reputation, but also because colleagues deserve to feel comfortable and accepted for who they are.
I have personally suffered several instances of ‘ganter’ (gay banter). Most of the time it’s funny and I can crack a smile, but sometimes it can cross a line. It can often make you feel acutely aware of how you are unquestionably and unchangeably different. Campaigns like Stonewall’s ‘No Bystanders’, which we support as a practice in London, are so important. The systematic removal of workplace banter that belittles and upsets people can only be achieved if employees have the ability to call out ‘bad banter’. So, next time you crack a joke at someone else’s expense, or see someone else doing the same, try not to just hear it. Stop it.