Small Victories

With the Brexit referendum last year and the recent parliamentary election, there’s seemingly no way to escape politics in Britain today. Even my children, who until recently had no clue about, nor interest in, politics, now come home from school and tell me about fiery political conversations in the playground.

Whichever side of the political divide one is on, few (I hope) would dispute the benefits of a more diversely representative parliament, and that is what last week’s poll brought about.

2017-06-09-1497015103-7446923-SophieMorgan.Polling-thumbThe election saw the number of female MPs, ethnic minority MPs and LGBTQ MPs increase, which is all positive news, although white male MPs still far outnumber the rest.

Meanwhile, the number of openly disabled MPs rose from two to five in the 2017 election which is a small step in the right direction.

Labour’s Marsha de Cordova, who is registered blind, took Battersea, previously a Conservative seat.

In her victory speech, de Cordova spoke openly about her intention to use her MP seat to lobby for the rights of disabled people:

“Accessibility in our public places and on public transport still falls short of what is reasonable.”

James O’Mara, another newly elected MP who ousted none other than the former Lib Dem leader Nick Clegg, gave an emotional victory speech:

“Twenty years ago, there was a fifteen-year-old boy with cerebral palsy who went to his careers advisor at school. His careers advisors asked him, ‘What would you like to be when you grow up?’ And that fifteen-year-old boy with cerebral palsy said, ‘I’d like to be a politician.’

If you haven’t noticed already, that boy is me.

I do have cerebral palsy, and I want every single disabled person out there to know, everybody who’s got learning difficulties, everyone who has mental health issues, everybody who has a physical disability like me, or has any illness…I will be on your side.

I will be your ally and friend and champion in Westminster.”

Does it really matter if we have MPs with disabilities? It matters greatly because disabled people are profoundly under-represented in public life, and public attitudes towards disability remain largely negative.

Key to protecting the rights of people with disabilities, I believe, is the normalisation of disability in society, and a powerful way of doing that is by making people with disabilities more visible, in parliament, in government, in media, etc.

We need more MPs with disabilities who can hold the ruling elite to account for its disability policies, especially as the government has made life-altering cuts to disability benefits in recent years, depriving people of the means to live independent, fulfilling lives.

There are more than 11 million disabled people in the UK, and yet disability rights remains a niche issue. That needs to change. Disability rights must become everyday rights.

 

 

 

 

 

Petite Pleasures

As a tall and average built Swede, I’ve never had any reason to shop in the ‘petite’ section – until now.

Yesterday I went to see Nick, my friendly and extremely tech-savvy audiologist to discuss a replacement for the hearing aid I recently lost.

It turns out that things move fast in the hearing aid business and what was high-tech two years ago, is now practically antiquated.shutterstock_130400447

“Do you want to go down the path of connectivity or the path of comfort and aesthetics?” Nick asked me as we sat down in his office.

“Huh?” I had no idea what he was talking about. “What’s connectivity,” I asked, feeling rather stupid.

“I mean, do you want to be able to control your hearing aid remotely with your iPhone and use it for listening to music?”

“Wow, can it do that?” I replied, sounding more like a 20-something hipster than a mature and dignified 45-year old.

It is true I am a gadget junkie of the first degree and the idea of being able to use a mobile phone app to control my hearing aid thrilled me. Suddenly, my hearing loss appeared less a liability and more a convenient excuse for acquiring yet another fun gadget.

But in the end, the sensible part of me, as well as the overriding concern about comfort, overruled my desire for a cool gadget to play with and I opted for a small, invisible hearing aid with no added extras.

What sold it to me was the prospect of popping a tiny piece of technology into my ear and forget about it. No more poking my ear to readjust an ill-fitting hearing aid.

 

shutterstock_378008296Before I could be fitted with my new piece of equipment, Nick needed to make a cast of my ear canals. Examining my ears with an otoscope, he exclaimed:

“You have rather petite ear canals.”

I must confess to being ridiculously pleased to hear my ears complimented, although the size of them has no real bearing on the functioning of my ears.

To make a cast of said ear canals, Nick first put some foam in my ears, followed by a bright green play-dough-like substance. There was a brief moment when both ears were completely blocked by the moulds, and I could hear absolutely nothing.

“So, this is what it feels like to be deaf,” I thought.

I left Nick’s office feeling giddy with excitement about my new hearing aids and relieved that a hearing test had shown no further deterioration in my already mediocre hearing.

Being hard of hearing can be an isolating experience that affects confidence, interpersonal relations and one’s sense of security. Although I am rather partial to silence, I feel ready to welcome the new world of sounds that a pair of hearing aids make available.

Just as long as I can switch them off when my kids start arguing.

Disfigurement in the UK

Last week Changing Faces released its much-anticipated report, Disfigurement in the UK, based on a nationwide survey conducted between November 2016 and February 2017. The report makes for unsettling – yet necessary – reading. For despite British society’s claim to fairness and equality, the report shows that when it comes to society’s treatment of, and attitudes towards, people with disfigurement, fairness and equality are severely lacking. Continue reading

Get Ready for Face Equality Day!

Gender equality, race equality, disability rights, minority rights, etc., are all familiar concepts that inform the political, economic and social spheres of our society.

Few, however, have heard of Face Equality. That is about to change as Changing Faces, the UK’s leading charity for people with conditions or injuries that affect their appearance launches the UK’s first Face Equality Day on Friday 26 May 2017. Continue reading

A Very Bloody Breakfast

When I started blogging two years ago I vowed to post something here every Thursday without fail, and no matter what the circumstances I’ve kept that promise to myself.

This morning, as I was preparing breakfast for my daughters, I clumsily cut my finger with the breadknife.

If it wasn’t for the fact that I take blood-thinning medication, the cut wouldn’t have been much of an issue because it was small, albeit deep. As it was, blood gushed from my wounded finger, my vision blurred as the room started spinning uncontrollably.

“I’m fainting,” I whispered to my husband who’d just come into the kitchen.

“No, you’re not,” came his answer as he hurried to stem the blood, “but you’ve probably cut off a nerve ending, which is why it hurts so much.”

A few hours later, and with an industrial-strength combination of painkillers in my system, I managed to get myself out of bed and into the shower, but I am still feeling the throbbing pain in my finger and my nausea refuses to settle.

The blog post I’d planned for today will have to wait until my head stops spinning.

Suffice to say, I’ll be staying away from the kitchen knives for a while.

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Homecoming

It’s Cleft Awareness Week (6-14 May), and I must confess that I’ve been a shamefully idle activist lately. I’ve been far too preoccupied with trying to find ways to stream episodes of the US TV series The Handmaid’s Tale (based on the dystopian novel by Margaret Atwood) than working to raise awareness about cleft lip and palate.

Here in the UK, Cleft Awareness Week is organised primarily by the Cleft Lip and Palate Association (CLAPA), a national charity supporting people and families affected by cleft lip and palate, and it does a fabulous job. Continue reading

What ‘Born Whole’ Means in 2017

_dsc6313When I started this blog in June 2015, the aim was to raise awareness about what it’s like to live with a facial disfigurement and disability.

My core message was that we are all born whole, no matter what we look like, how many chromosomes we carry, our physical and intellectual limitations, etc.

Nearly two years on, I remain passionately committed to the original aim and message of the blog and yet world events as well as my experience of raising two strong-willed daughters of mixed heritage, compel me to broaden the range of topics I blog about.

Far from representing a departure from my initial ideas for this blog, I see the growing range of blog posts as an expansion that falls within the overall concept of born whole, for it’s a concept that is relevant not only for people with disfigurements or disabilities but everyone.

With the election of Donald Trump, the UK’s vote to leave the EU and the growing presence of far-right parties in mainstream European politics, racism, xenophobia and misogyny are becoming normalised.

As a result, we find ourselves living in an increasingly unpredictable and frightening world. Borders are closing, and the division between ‘us’ and ‘them’ is becoming sharper.

hand-1549136_640‘Born whole’ says that everyone’s life matters, whatever our nationality, ethnicity, religion, gender, sexual orientation, social class, appearance and ability. Unfortunately, our societies appear to be moving away from what hard-won inclusion we’ve achieved, and towards intolerance and isolation.

Ultimately all kinds of xenophobia boil down to the same thing: fear and ignorance of those who are not like ourselves.  So, in whatever small way we can, we must all do our bit to fight that fear and ignorance, not with sticks and stones but with open hearts, open minds and a healthy dose of humility.

But to do so, we must become conscious of our own prejudices – we all carry some no matter how tolerant and accepting we believe ourselves to be – and work to break them down.

If we accept that everyone is born whole, then we must also accept that no one’s life is worth more than that of another human being.

 

Rebel Women of the Past

The summer term had just started when my 7-year old daughter came home from school lamenting the injustices of life.

“Mummy, we’re learning about explorers this term, but they’re all boys! I’m a girl, so I want to learn about girl explorers!”

Indeed. My daughter wasn’t content with reading about the likes of Christopher Columbus, James Cook and Sir Francis Drake, so I set about looking for notable women explorers of the past. And there are quite a few although history hasn’t afforded them nearly as much attention as their male counterparts. Continue reading

Second-Class Citizens

On 1 March, Channel 4 aired a special episode of Dispatches: Under Lock and Key, which gave a disturbing insight into how more than 2,500 people with learning disabilities across the UK are locked up in hospitals, forcibly restrained and plied with anti-psychotic drugs that render them catatonic.

Five years ago, following a series of inpatient deaths, the government promised an end to this practice, vowing to move people out of large institutions and into local, personalised community-based care, but this has not happened.

Channel 4’s programme focused on St Andrew’s Hospital in Northampton, a leading provider of specialist mental healthcare in the UK, where a technique called prone restraint – or face down restraint – is commonly used on patients, including children and adolescents with autism and learning disabilities.

Any treatment, it soon became apparent to anyone watching the programme, centres largely on controlling patients with challenging behaviour. As a result, many patients keep getting worse, not better and parents face an uphill battle to secure their children’s release into community-based care.

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The fact that thousands of young people with learning disabilities are still being locked up and treated like prisoners is nothing short of criminal. A learning disability is not a mental illness, and an institution like St Andrew’s is not the right place for a person with a learning disability, as many experts in the field of learning disabilities will confirm.

As the Dispatches programme showed, those who were lucky enough to be discharged into community-based care generally saw their quality of life dramatically improved; no longer needing medication and, with the proper support, being capable of a more independent life.

But with the NHS facing near collapse, and with the introduction of damaging cuts to disability benefits, the future looks bleak, to say the least, for the thousands of people forcibly locked up, denied their fundamental rights and treated as second-class citizens because of their learning disability.

 

What is a learning disability?

“A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example, household tasks, socialising or managing money – which affects someone for their whole life. People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complicated information and interact with other people.” (Source: Mencap)

All Lives Matter

I had a plan for my blog this week; I’d done the research and knew what I wanted to say. But when news of a terror attack in Stockholm, my hometown, reached me, my plan fell apart.

Last Friday afternoon, a man drove a truck down a popular shopping street and into a department store. Four people – including two Swedes, one Brit and a Belgian – died and 15 people were wounded in the attack.

Still enjoying my holiday in the Canary Islands when the attack took place, I was deeply shocked by the incident, and my first thought was to check that friends and family in Stockholm were safe.

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In contrast, when a British man deliberately ploughed his car into pedestrians on Westminster Bridge and outside the Houses of Parliament last month, also killing four people, my response was muted. Perhaps that’s because London is no stranger to terror attacks and remains almost perpetually on high alert.

At the time, I was sitting in a movie theatre in north-west London together with my daughter and her classmates, and Westminster seemed very far away. I was even a little annoyed when text messages started coming in from people asking if my family and I were ok. Although London has been my home for almost 18 years now, the subsequent attack in Stockholm felt much more personal.

Two days after the Stockholm attack, the BBC reported that more than forty people had died when bombs exploded outside two Christian churches in the Egyptian cities of Tanta and Alexandria. As tragic as the deaths in Stockholm were, the attacks in Egypt prompted me to take another look at the almost daily terror that occur around the world, and this is what I discovered:

IMG_0058On 7 April, the day of the Stockholm terror attack, seven people were killed in Nigeria in an attack led by the militant Islamist group Boko Haram.

In Mogadishu, 15 Somalis lost their lives on 9 April in an attack orchestrated by Al-Shabaab, a jihadist group based in East Africa.

On 10 April, furthermore, as many as five terror attacks around the world took place, including Somalia where ten people lost their lives; South Sudan, where also ten deaths were reported; and in Iraq where an attack claimed by the Islamic State killed 12 people. And then there’s Syria, where men, women and children are killed daily, most recently in a government-led gas attack.

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Yet, terror attacks in Europe receive vastly more media coverage and public attention than any attack, no matter how deadly, in other parts of the world. Because despite liberal Europeans’ pledge of allegiance to universal human rights and racial equality, the hard reality is that the colour of your skin still matters.

While I wouldn’t want to diminish the tragedy of the lives lost in London and Stockholm, it bears reminding that, ultimately, losing a child, parent or loved one in a violent attack is an unfathomable tragedy for anyone, whether Swedish, British, Somali, Egyptian or Iraqi. All lives matter.