When I met genocide survivors

Meeting survivors of genocide – my blog for Holocaust Memorial Day 2012 has now moved to this page.

 

I have been reflecting again this week on why HMD is so important. I know, in a small way, how hurtful words can be. How powerful they can be – to make people live in fear or to give comfort and hope.

Please pledge to speak out against hatred and hurtful words – whether it’s cruel words on Twitter, Facebook, at work or spoken by people you work or live with.

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Visit HMD.org.uk


HMD 2012

The theme this year “asks us to think about the rights, responsibility and duty we all have to speak up when we see or hear something which we believe to be wrong. It challenges us to learn about what happens when we don’t speak out and what can happen when we do use our voice.”

First I read.

Then I watched.

After I cried.

Now in my weakness I am strong.

I am alive

I can and will speak out against the path to genocide.

When I met survivors of genocide

In 1988 I first learned about the Holocaust as a high school student. Genocide was something consigned to history, or so I thought  – but it wasn’t. The Guatemalan Civil War, the regime in Chile, the Lebanon massacre were to come.

Then came Rwanda – the second time I had heard the word genocide and the first time I had witnessed some of the most graphic news footage of the time.  About a year later Srebenica in Bosnia… and this is where my story starts.

Bosnian widows grieving at 11 July 2010 funeral.JPG

When I volunteered for the Red Cross, many of those fleeing Bosnia and surrounding countries were coming to the UK hidden in lorries etc. I would hear people complaining about asylum seekers and making it clear these people weren’t welcome. I was proud to be in an organisation which was world renowned for providing help based on the grounds of neutrality and in a none-judgemental way. I will never forget how my friends would be called out to set up beds and treat the wounded.

[Image, above, Bosnian women grieving]

People arrived with bullet holes in them, their families missing or dead. They arrived not knowing what would happen, fearful of whether they would be sent back to die.  They looked at my friend’s uniform bearing the Red Cross – a symbol of protection bringing the look of relief – Krissy Cross they said.  It didn’t take a translator to work out that comfort, food and some reassurance was going to be needed.

I got involved with a First Aid course for Albanian people, refugees, who were staying in the UK and spent long hours working with a translator I had to source. I went armed with all our handouts, but as it happened, they had very good English and a translator in attendance by that time and my efforts went unappreciated!  After all the terrible things, here was a sign of hope, a new life.

I feel angry that people in my community were speaking the language of hatred against these people, wanting to send them back where they came from.  It was the power of hurtful words, exclusion and stereotyping that had contributed to changing their life back home into one of terror and massacre in the first place – the first stage on the path that led to genocide.

I leave you with the following to contemplate.

*Resources from Holocaust Memorial Day Trust

“Many people consider tackling the issues of equality and fairness to be the province of anti-discrimination law, of advocacy groups, or of government, to be addressed by discrete, often marginal programmes of activity directed at particular groups. But the greatest impacts on the opportunities open to individuals are made by everyday decisions in every part of society, most of which apply equally to everyone.”

Equality and Human Rights Commission, 2010.

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No room at the Inn – well no bed to be precise.

About 9 months ago the dates for the Firework Championships were announced – so we quickly booked into the Holiday Inn, Plymouth. I’ve written a separate blog post on our holiday.

We had chosen the Holiday Inn based on personal and practical requirements. The location meant we could walk to see the fireworks, it had parking and was one of the few places to have air con (as I need to keep the air cool because of my ventilator mask which otherwise gets really hot and uncomfortable)

At the time of booking the only wheelchair accessible room available was one with a double bed.

Out of 211 rooms there are only 2 with wide doors etc and a larger bathroom for wheelchair users which is rather poor. The chances of getting a twin room in hotels with so few rooms are slim.

 

We made the wrong assumption

 

bed

 

When we have stayed at other similar places (Premier Inn, Travel Lodge and even other Holiday Inns etc) where we can only get a double bed, we have been offered a camp / folding bed or sofa bed.

I have to take my pressure relief mattresses, turning equipment that goes under the mattress etc and I use a ventilator – so sleeping in a double bed with my husband isn’t an option. However, he has to be next to me to make sure I’m ok and to help me during the night.

Just before we went I spoke to them on the phone to ask for the folding bed and was told they had a policy not to provide these. Also, if we wanted second room for a carer (which wasn’t adjoining through an internal door, so wouldn’t have been any good for us anyway) we’d have to pay for it.

 

 

Making it possible to stay for work or leisure

Hotels have to make ‘reasonable’ adjustment, under UK  equality law,  to enable disabled guests to use their services – including providing aids and equipment. I’m assuming this is why the portable bed is often provided for carers in other places.

Another example is that if a person can not use the bath they can request a bath lift at one of the major hotel chains. Another chain offers low beds that can be raised on blocks to suit different height requirements.  It can make the difference between going or not going on holiday.

Also, it’s not only holidays that are the problem,  I’ve been to many hotels in the past for business trips, attending conferences or running training events for my company – and it really made working life difficult.

Basically, affordable, portable equipment that can help a range of guests have a much better stay are one of the things they can do for customers.

An apology

Holiday Inn isn’t cheap, we didn’t want to pay double and we needed and wanted to sleep near each other. My husband didn’t want to sleep on the floor – so on principle we felt unwanted and cancelled – moving to the Future Inn.

Since then, we have had an apology from Holiday Inn after I made a complaint. The manager was very polite and wrote in detail about the facilities they do have and the training provided for staff. He also explained that they do have a policy of offering a free room for carers and will consider a portable bed.  I hope this is a real genuine consideration.

I would like them to understand that things like a portable bed would have made all the difference and is better than the other option of us taking a camp bed or my husband sleeping on the floor.

I suspect many other people are in the same boat as us (from what my friends have been saying) and I know some wheelchair users who sleep in their chairs because of the ‘bed’ problem. It’s hard finding accommodation when most hotels only make 1% of their rooms wheelchair accessible.

Access for people with mobility impairments is more than wide doors and a few grab rails – its also about giving accurate information so that people can decided where they want to spend there money. We need a higher proportion of accessible rooms to choose from – that have been designed in a way that will benefit a wider proportion of disabled guests – not just mobile wheelchair users who don’t need assistance.

 

Things we have in common

Today is Bipolar awareness day. I want to write about the things I have found in common with my friends who have bipolar. Sometimes people are surprised by this as they see mental health as ‘different’. I think on many issues of equality, health care, social care and life in general – we share the same joys and woes in many ways. *By ‘both’ I mean both me and my friends who have bipolar.

Historically

Historically there has always been a division between people with different impairments. When we hear the phrase ‘disabled’, we tend to think about people with physical/sensory or learning impairments. Not so much now, but I can remember 15 years ago when organisation of disabled people did very little for those with mental ill health. Campaigning and awareness of mental health illnesses and how they affect individuals and families was left to charities and organisations that supported people purely in the area of mental health. It felt very much an ‘us and them’. I don’t see that so much now. It feels more like a ‘united we stand’ on many issues.

What have we got in common?

Well, I read today that it takes an average of 13 yrs for a diagnosis of bipolar! That’s quite amazing. Also that 85% of people got the wrong diagnosis such as depression.

Getting the right diagnosis of any health problem is critical to get the right treatments / therapy / support etc. We all know that. The label is also really important from a psychological and practical point of view.

It can be your ticket to filling in the box on application forms that require the full name of your illness of impairment to get everything from benefit support to a free cinema pass or VAT relief (and yes the latter two are beneficial to people with mental illness).

It also gives you and your friends something to Google to see what it is you’ve got to educate yourself and others!! It can link you into peer support and other support from specific charities. It can help people at work or in education understand you more and be supportive – and you can more easily get support like access to work and disabled student grants.

1) So our first thing in common, that we can chat about and identify with, are problems with not getting a quick (and correct) diagnosis.

I know some people with MD (that’s what I have) who have waited many many years for a diagnosis. Some are still waiting. It makes life very difficult and can be a real worry. In the meantime your don’t get the right treatment and can deteriorate or take medication that does more harm than good. I have other medical problems which gave me a wrong diagnosis resulting in years of pain, GP call outs, hospital admissions and wrong medication for what was eventually resolved by one surgery. They said the diagnosis should have been obvious… hmmm.

2) Little understanding from other health care professionals.

When my friends see a Dr other than a mental health specialist (who knows what bipolar is) they do not understand how bipolar impacts on other health conditions or getting treatment for them. I’m the same – my GP said they don’t know anyone with MD, neither did my dentist, my gastroenterologist etc. etc. I have to tell them the health implications so they can figure out what the options might be and link it in with their specialist knowledge of the problem in question. It’s all a bit hit and miss really. Mostly miss.

3) Difficulty in being understood by family.

I have family who refuse to accept the nature of my impairment or just don’t understand how it affects me. This is common to people living with bipolar too.

4) Social services do not understand the nature of my impairment when it comes to ‘needs’.

This is a BIG common debate I have with my friends who come within ‘mental health services’. It can be a struggle to get the right amount of things like Personal Budgets / Direct Payments.

5) If you have a physical impairment related need for support and also a mental health need for support people only tend to focus on one and ignore the other.

People don’t see the ‘whole’ of us! We are often classed under ‘mental health’ or ‘physical impairment’ services. The box doesn’t stretch to having more than one thing for ticking purposes.

6) We both have had Access to Work and Disabled Student Allowance support – and all the ups and downs that comes with it!!

7) We both can’t drive and have a Blue Badge.

Some of my friends also have a Blue Badge – just because you can physically walk doesn’t mean you don’t need closer or longer parking. If medication effects your weight, awareness of your surroundings, memory or you have anxiety – close parking can make a huge difference (although it can be a real struggle to get due to the application process). Many people even with physical impairments struggle to get a badge.

Many of my friends with bipolar were unable to drive or hold a licence and, like me had a PA driver or a friend to drive them. My University friend, in a manic state, would try and drive cars at 130 m.p.h so it was safer for him to be a passenger and have assisted driving or like my other friends who are on medication which means they can’t drive. It was also safer for them to go quickly in and out of shops using close parking as there were more triggers walking past other shops. We could share the joys and woes of accessing shops – we are the different yet the same.

8) We are both entitled to getting Direct Payments (Social care support) if our needs meet the eligibility criteria where we live. This is cash given by the local authority we can spend on meeting our needs. We had all experienced similar difficulties getting these.

9) We can equally be harassed and victimised by other people, as disabled people.

10) We are both ‘covered’ by disability discrimination law / equality law.

11) We can both be turned down for jobs because of our impairments…. and are frequently.

We felt we were less likely to be employed and experience life on a low or benefit income. We shared the woes of being broke!

12) We all had university degrees – our impairments don’t make us stupid but studying can be difficult as was getting good support.

13) We felt we were quite capable of having great, well paid jobs given half the chance and good support.

14) We had all experienced negative attitudes caused by media – and experienced some positive ones too.

15) We have had times in our lives when, to look at us, nobody would think we had any sort of impairment – it is hidden. It is hidden when we are on the phone or talking to friends on the computer – yet we migh still be ‘ill’. It is comforting to know we understand this when talking to each other. It makes me feel good 🙂

That brings about new sets of problems and experiences. Also, when you are really ill, people might not be able to tell unless they know you well. People don’t understand when your abilities change overnight. People think you are being lazy and keep asking why you can’t go out or be social.

Homophobes in denial

We are all entitled to freedom of thought and speech. If people don’t like something then they can say so openly. If someone says outright they don’t like ‘gays’ then that is their opinion. If someone refuses to go to Brighton because ‘it’s full of gays’ at least you know where they stand.

What makes me angry is when people hide or outright deny they are racist, homophobic or disablist – then show they are. The ‘I’m not homophobic’ guy who can’t resist adding to a conversation about clothing ‘but kill me if I start wearing PINK’.

I did a job interview once as part of a panel. Two of the several candidates were from a well known Asian community. After a ‘we pride ourselves in equality’ statement was read out the interviews began. Afterwards, I was horrified when the Asian women were knocked off straight away and my ‘hang on a minute’ comments to pick through their reasoning were sharply silenced. It was blatant discrimination from a panel who practiced equality. The women were no better or worse during the interview than the other candidates.

One of the panel was an equality champion in the company… scary.

Crips in computer games: perhaps not?

Really interesting forum chat about disabled characters in computer/video games by game developers. Gamedev link

I’m pretty much a casual game player (All game genres on my iPhone, Sims3, Facebook). I’ve also done some Beta testing for games and had some success getting a Face book game to include aspects of disability within it (see my formal blog for that story). The latter was really good because it was about making game players consider equality to progress with the game.

The forum chat very clearly highlights some of the pros and cons of whether to include disabled characters in games including a lead role. You have to ignore their language (like labelling Forest Gump as brain crippled) because the points they make are very insightful.

I particularly liked their grasp of some ‘Social Model’ type thinking. That characters who start of without power inducing swords, magic clothing or unable to understand a puzzle are significantly disabled in there kingdoms. In fact the quests and puzzles to solve involve interacting with the game environment and characters to come up with solutions and progress. We perhaps don’t need Sword fighting wheelchair Ninja Warriors just for the sake of inclusivity?

Games set in mythical lands or other realities are one thing. However, take something like Sims3 where people play out life that is more similar to our own. I find it turns my stomach to see the game award mean interactions, bullying, vandalism, crime and anti-social behaviour. You can even deliberately torture and kill a Sim or their pet.

On one hand I’d like to see Sims with impairments be included into the mix and who wouldn’t love a dog with wheels for legs (*cough). However, with so much disability hatred amidst the population, how long would it be before we become victims of hate in both our virtual and real worlds?