Friday, 1 July 2016

Accessible Activism

It was bound to happen: a post where I combine politics and accessibility.

Some people are political and social activists all the time however, many are only now putting on the mantle of activist in response to the current political climate in the UK and USA. Activism can come in many forms from blogging a tweeting, to going to rallies, to attending meetings.
But is your activism accessible, and are your expectations about activism inclusive of disabled people?
Often the very people who benefit most from activism are excluded from taking part because of the very things they are concerned about. This post will focus primarily on accessibility for people who are disabled, chronically ill and neurodivergent however, you may wish to consider accessibility in terms of socio-economic status, age and language. Can young people take part, and are you reaching out to the elderly? Is your campaign material available in the languages commonly spoken in your city? Do you have an intellectual bias which may exclude poor communities with lower levels of education? Keep in mind who you activism is for and make sure you include the people who need it most.

Now on to the topic of disability access in your activism. I'll break it down by types of activism, though many groups use combinations of two or more. The following is not a list of things that you should always do in all circumstances, but they are things you may want to keep in mind and be prepared to do if people require it. Much of this information is good practice anyway, and can benefit non-disabled people just as much.
In general:

  • Make sure you language is sensitive and not disabilist 
  • Think about how information is distributed and be prepared to have alternative formats
  • Consult with specific disability rights groups to make sure you are representing them accurately
  • Listen to and value what disabled people have to say on how your issue effects them and their community
  • Be aware that encouraging people to "get out and do" can be isolating as many disabled people can not do this. 
    • Do not berate or shame people for not doing a particular form of activism.
    • Suggest alternatives that may be more suitable for them.
  • If you run an activist group or event, create an equality and diversity statement that includes disability and mental illness. 
  • Remember that people's abilities will differ from your own. That does not make their activism less valuable.
Printed Media and the Written Word
This activism mainly uses blog posts, text based websites flyers, leaflets and posters in order to disseminate information and garner attention. The focus is on sharing information, news and advice on your chosen subject.
  • Summarise key information clearly, preferably using bullet points or similar.
    • Some people struggle to read long paragraphs, a summaries help get the important information across. 
  • Use clear fonts and colours to print any text. Avoid changing colour and font too frequently.
  • Consider producing or making available flyers in different formats i.e. large print or even Braille.
  • Keep your language simple or include a glossary of any unusual or specialised terms.
  • Print on off-white paper. Pale blue, cream and pale yellow are advised for accessibility for people with dyslexia and migraines and similar.
  • On websites, avoid using frames and make sure any info graphics, cartoons or videos also have a full text transcript.
  • Have offline versions of flyers and documents available for people who need to print out or to format for a text reader.
  • Avoid using red and green in combination due to colour-blindness. 
  • If your campaign focusses on letter writing/emailing then consider alternative means for people to get involved.
Jerry has Downs Syndrome and is not confident writing a formal letter to his MP. He talks to the campaign organiser who pairs him with another letter writer who is able to transcribe what Jerry says in to a letter. Jerry reads the final version and is happy their voice has been made clear before sending the letter.

Rallies, Protests and Marches
Getting people out on the street is a great way of garnering attention and showing showing support for an issue. Rallies and Protests can be organised by small grass roots groups as well as larger formal organisations (think about your City Pride events for example). They can be difficult for many disabled people to get involved in though.
  • If you event is in a static location, provide an area and clear access for wheelchairs and scooters.
    • Level access also helps people with other mobility difficulties.
  •  Arrange for seating - folding camp chairs can be a good idea
  • If you are arranging a march or moving protest, publish your route in advance so that people can join up at a suitable point.
  • Move at a slow steady pace so that people can keep up, consider arranging for people in wheelchairs or with mobility issues to go as a group near the front to avoid getting crowded and to set the pace.
  • Consider the location of your event. Being near to parking and public transport links makes getting there easier.
    • If your location is not near public transport consider organising a car pool system or pickup from a central location.  
  • Avoid march routes that go along hills - up and down can be problematic.
  • If possible arrange for shelter. A person using a walking frame may not be able to hold an umbrella.
  • Use the best amplification you can get so everybody can hear.
  • If you are providing placards, provide a variety of sizes and shapes so that there is something for everybody.
  • Consider wording and language on placards carefully, avoid disabled more mental illness slurs. 
  • Consider the duration of events. Some people can not stand, walk or be out for long periods.
    • If you are running concurrent events i.e. a meeting after a rally, consider a break for rest and refreshment between them.
Rosemary has POTS and can not stand for long periods. She is relieved that the rally she is attending as a cluster of reserved seating so that she cat sit for the duration.

The Spoken Word
Whether at a rally or protest, as part of a conference or at a local meeting spoken word is a big part of how activists can spread their message, garner interest and raise enthusiasm.
  • When arranging for speakers make sure to include people with different disabilities, chronic illnesses and mental health needs.
    • Their input doesn't have to be confined to those topics. Representation is important.
  • Provide water and seating for any speakers, ask them if they would prefer to speak first or last.
    • Fatigue, anxiety, pain etc, may mean some people need to speak earlier.
  •  Hire a BSL interpreter and make sure they are positioned clearly for the audience.
    • For conferences you may have to assign an interpreter based on attendees needs.
    • Give any prepared material to your interpreter in advance.
  • Ask speakers what their needs may be in advance.
    • this may include seating, level access, shelter if outside or an interpreter. 
  • Use the best sound system you can for your situation. Good clear amplification is important.
  • Use visual aids like PowerPoint or Live Closed Captioning or provide written transcripts, notes or flyers covering the key points of what is said.
  • If you are producing a video make sure to include accurate closed captioning. 
  • Speak clearly and at a steady (not slow) pace. 
    • Avoid using any colloquialisms or unusual abbreviations.
  • Be tolerant of mobile phones: they can have accessibility apps or may be recording so that the person can access the speech at a later point or with specialist software. 
    • Some people with conditions like ADHD actually concentrate better when they are doing two things at once. What may look like a distraction may be an aid.
  • Make sure that any sound effects or music do not obscure the speaker. 
    • Avoid use of loud or sudden sound effects like bangs.
Marja has PTSD triggered by angry shouting. She is relieved that the speakers at the demo all speak clearly without resorting to shouting angry slogans.

Picking a Venue
This is partially covered in the previous sections but does require some of its own notes. Your venue can be a big factor in if people can take part in your activism. This can apply whether it is a rally for a thousand people or a meeting for a dozen
  • When deciding on a location or venue for your event keep accessibility in mind.
  • Look for level access to all main areas.
    • Where possible this should not be a service entrance. 
  •  If possible choose venues with hearing loop systems. 
    • Find out the specifics in advance and let your attendees know.
  • Make sure there is space to manoeuvrer mobility aids through doors, around tables or down aisles.  
  • Try and choose a venue that is near to public transport or car parking.
  • For conferences and large events, having a "quiet room" can be beneficial for those who need a break.
  • Find out if food and refreshment is available or if people can bring their own.
    • Consider different dietary requirements.
  • If possible find out if you can control lighting and temperature as some people have sensitivities.
    • Strong fluorescent lighting or flickering lighting can be particularly problematic.
Vic wants to attend meeting of a local lobby group but hasn't been able to because the group use the upstairs room of a pub which they can not access. They talk to the lobby group who agree to change venue to a downstairs location so that Vic can attend.

As stated this at the start this isn't a definitive list of things that activist groups should be doing however it should assist you in thinking of what things can be done. More than that it should help to foster an attitude of inclusiveness toward disabled activists that will help make sure your aren't inadvertently excluding people.

Of course, there are also plenty of things that disabled activists can do themselves to make access easier (making sure to manage our pacing for example) but the weight of making sure disabled people can access your activism shouldn't and can't solely be their responsibility.

Monday, 27 June 2016

Your leave vote was racist

I have seen several people now, people personally known to me, saying the following:

"People are saying I support racism because I voted Leave but I'm not a racist."

And I need to address that as clearly as I can.

There were of course, a number of legitimate reasons to consider voting Leave which weren't associated with racism or xenophobia. Many hard left groups initially advocated for a Leave vote due to socialist, economic ideology. They made a pretty good case for it which of course was labelled "Lexit" (Left exit). There were also other arguments to do with exactly how people were governed, systems of power and rule and so on. Some people called this "Sovereignty"* and whilst many of those arguments were based on inaccurate information, in no small part due to the appalling campaign strategies, people honestly believed and supported them.

A flyer from TUSC one of the groups that supported the so called "Lexit"
 So I can understand why some people may have initially chosen to support leave. When the referendum was first announced and it sounded like we might have an opportunity for honest open discourse and a chance to democratically share out views on the EU people of course embraced the discourse. So if you were one of those people AND (and I can not stress this enough) you voted by post or proxy early, no you are not a racist nor did you support racism.

However, for the vast majority of voters who voted on the day or later in the campaign then yes, you are a racist or you supported racism.

The Leave campaign adopted a strategy of arguing on a base of Immigration, Patriotism and Sovereignty very early on. It was not long before that was the main focus that was pasted across every front page, down the side of buses, on poorly identified propaganda through our doors and in every speech and statement the campaign made. This was about immigration. It was about ethnicity. It was about xenophobia. It was about pitting us against them. Yes there were other so called arguments thrown in to the mix, things like economic stability, deficits, and trade agreements. Things that were routinely and thoroughly put down and debunked repeatedly by experts in the field.

If you chose to ignore the expert reports, the concerns and warning raised by economists, business tycoons and world leaders and still felt that Leave had a valid economic case that you supported, you could in no way ignore the cacophony of racism coming from their camp. There was literally no way to avoid it. There was no way to deny that racism and xenophobia were a core part of the campaign.
There was no way to ignore a rising wave of so called nationalism and fear mongering about "them".
You knew it was there.

Let me pause to give you a brief analogy.
If you buy and read the Daily Mail and say "I only get it for the sports.", you are still supporting them. Your money goes in to their account, your purchase or online view goes in to their statistics. You give them money each day to conintue operating and you give them your support to say "the widest read paper" or "our readership has increased by...". Notice how they don't break it down in to "The widest read newspaper except for them who only get it for the sport.". No, sports only or full paper, you are one of their readership, you have given them legitimacy.

Well, if you voted Leave but aren't a racist that is exactly what you did with the Leave campaign. You gave them legitimacy. You threw your vote, your support, behind a campaign that was racist. You supported racism. You may not believe yourself to be racist, and maybe in your day to day life you are not, but when you cast that vote and supported a racist campaign, you supported racism.

just one of many pictures found on twitter following the result

In the days, hours in fact, following the referendum results there was a massive upswing in the amount of visible and obvious racism and xenophobia. Cards being put through doors and handed out outside schools. Slogans and stickers appearing in cities. Slurs being shouted, people being berated. And so many of them directly referencing the referendum.
"We voted Leave, now fuck off".

These are people, racists, who are emboldened by the support the Leave campaign received. They are supported by the Leave campaign and by the Leave victory and that victory was supported by the people who voted for it. If you voted Leave you support racists.

So there are two options here, either you are so shockingly naive that you somehow missed entirely that racism and xenophobia that was tied up in and weaved through the campaign or you knew it was there and you voted anyway.

As I said I don't think anybody was that naive unless they voted very early before the extent of he situation was so apparent.

That leaves the second option. You saw the racist campaign. You saw that it was a campaign shored up on xenophobia and that relied on stirring up a culture that pitted "Us" against "Them" and you chose to vote anyway. You can tell yourself you have as many good reasons as you want: economic, so called sovereignty, a concern about international trade but, you still chose to ignore all that racism. You chose.
You made the conscious decision that whatever your reasons were, they were more important than racism. That they were more important than people facing xenophobia. That a culture of racism and hatred was worth enduring so long as you got the benefit you had fixated on.
You put your own needs before those of millions of people because you decided racism was an acceptable price to pay for the chance of a little bit of economic stability or the chance of a better house price.

That is racist.
Your act was racist.
You are racist.

You may not be handing out those cards, or shouting insults in the street but don't think that doesn't make you racist. Racism goes far beyond simple slogans and is a form of systemic oppression against minority races and ethnicities. It is the pitting of the majority against the minority so that the majority can maintain a feeling of superiority. It is saying "my needs outweigh the right of people to not be oppressed or treated differently based on their skin colour or ethnicity.".
Due to its long history the UK already favours the white, British born, English-as-a-first-language, nominally-Protestant, over everybody else. It's built into the very core of our legal system. It developed over centuries and has yet to be undone.
To vote Leave because you feel that the small chance of bettering yourself is more important than stopping more inequality for people who are not white, British born, English-as-a-first-language, nominally-Protestant is to actively and knowingly take part in and support that systemic racism.

Every single one of us who is white, British born, English-as-a-first-language, nominally-Protestant** benefits from systemic racism. We just do. However we have a responsibility to do what we can to offset that, to fight against that and to not make it any worse. Some would argue that doing nothing is a form of racism. That's a tricky one.
However, if you actively take part in something that perpetuates that inequality and that actively encourages racism and xenophobia and actively supports xenophobic attacks, then yes you are racist.

You had a choice and you made it.

Now I want to finish up with something verging on positivity.
Maybe you voted Leave. Maybe you can now recognise that what you did was racist. But it's ok. People make mistakes. Trying to justify your actions is normal. However, rather than fervently deny that your vote was racist and maybe you didn't examine your own motivation enough or recognise some inherent or systemic racism , you can accept it.

You can say "yes I did, and yes I was wrong.". You can say "You are right and I will learn from this". You can listen to people's concerns, you can listen to their fears. You can recognise where you went wrong and make sure it doesn't happen again. You can find out what changes you can make.
You can remember that those of us who are in a position of white, British born, English-as-a-first-language, nominally-Protestant do need to take time to think about our actions now and then and do need to make an effort to not perpetuate or support racism.

This time you were racist. Next time, you don't have to be.

Addendum: I want to add that this does not mean that there are not individuals who voted remain who racist. There certainly are. I also know that there is systemic racism within the EU (as a population and as a political body) that desperately needs to be dealt with. However, the campaign was not built on and did not deliberately encourage racism.

*I believe that the word Sovereignty in this campaign has been used in such a way that it is indistinguishable from "Nationalism" it is a polite way of saying "mine not yours" and of saying "I want the power to keep people I don't like the look of, out".

** I include myself in this as a bisexual, genderqueer, disabled person. My minority status in those areas does not remove the privilege I experience as somebody who is white, British born, English-as-a-first-language, nominally-Protestant (i.e. I don't practice another religion which doesn't have the same protected rights as being Protestant).

Thursday, 23 June 2016

Access All Areas vs "but you don't look sick"

Today I want to explain to you why I use accessible toilets and changing rooms.
Now let me make it clear, nobody who uses a disabled or accessible facility owes you an explanation. They don't have to give you proof.
However, I do think that explaining to people, in this manner, from the safety of my own blog instead of when I just need to pee, helps people understand and perhaps make the world a little more accessible for the people who need it.

For those of you new to my blog or who don't know me in real life, a quick run down of my disability and chronic illness.
I have a diagnosis of Chronic Lyme Disease Syndrome. This is also sometimes called Chronic Lyme Disease, or Post Lyme Disease Syndrome. It's a confusing and ever shifting array of names simply because it is an illness still being studied, that isn't fully understood and the exact parameters aren't clear. More commonly I say I have moderate to severe Chronic Fatigue Syndrome or ME (two names for the same thing) as that is what it presents as and is something people are more familiar with. In a nutshell I experience full body fatigue following little or no exertion, that is disproportionate to the exertion and is not relieved by rest. I also get joint, muscle and nerve pain in various parts of my body, bouts of vertigo and frequent migraines.

That description alone may be enough to explain why I use accessible toilets, changing rooms and other facilities but, I'm going to break it down further.

Accessible facilities are often closer to a main entrance or to the main spaces. This means that I don't have to walk as far to get to them. You may not think that walking an extra 20m to get to the main toilets would be much of an issue but to somebody with CFS/ME (and many other conditions) it actually makes an impact. On a bad day that extra 20m can make a big impact and feel more like running a marathon. On a good day I can probably manage it, but every little bit of energy used up adds up over the course of a day and can result in severe fatigue later on. It's all about careful energy management. Really when it comes down to it do you want to use your energy on going to the loo or, if you can, save that energy to do interesting things?

If the accessible changing room or toilet is managed correctly, there is usually not a queue for it. In busy places or at times when there is a rush to the loo (like an intermission at a play) you'll often find a queue for the main toilets. I've just used up precious energy to get to the toilets, and now I have to use more energy to stand and shuffle forward for 5minutes. Not only does that increase fatigue but it is likely to increase pain levels as well.
The accessible toilet however will usually, at worse, have one person in it and one person waiting. That is much easier for me to cope with physically.

Accessible toilets and changing rooms are often larger and have more coat hooks and surfaces in them. Most of you have probably experienced the frustration of being in a small cubical and having to manoeuvrer to take off a coat, put down a bag or two (without getting it covered in pee), use the toilet and then have to do the whole thing in reverse. It's even more difficult in places like swimming pool changing cubicles where you don't want anything to get wet and have to do a full clothes change. Now image trying to do that while in pain across several locations of your body, with reduced movement in your limbs and trying to conserve energy.
Larger spaces with the opportunity to arrange your belongings conveniently help to reduce or at least not increase pain, and use less energy. Simple thing like being able to put a bag on  waist high shelf mean that I don't have to bend down and hoist it up again. It really makes a significant impact on my symptoms.

Finally, when fighting with increasing fatigue and constant pain, I often find my anxiety rising. I can reach a point of sensory overload because so much of my concentration is on managing my symptoms and trying to keep going when I'm out of the house. The world becomes a confusing place that is difficult to process and interact with. And then I need to find a toilet.
Luckily, disabled toilets as mentioned above are often more conveniently and obviously located. They are often clearly signposted and I don't have to navigate a network of corridors and doorways. Just one door and I'm in. That takes the pressure off and stops symptoms getting worse and allows me to function.

I've mainly focussed on toilets here, but the same applies to seating in public places and on transport as well as any other facility which is designated as a priority for disabled people. It may not be immediately apparent why we need these things to be available, but we really do benefit from them.

Now for the tricky part. If I didn't have my stick, most of the time you'd have no idea I was disabled or chronically ill. I don't show it much. Even with the stick some people look sceptical. But just because you can't see my disability doesn't mean my need for accessible facilities isn't there. You don't get to challenge, you don't get to question, you don't get to be the one who decides if I am disabled "enough" to use something. You just have to accept that I know what I am doing.
If you aren't disabled you also shouldn't be using those accessible facilities. If you are able bodied and using a disabled toilet then that means somebody who needs it is having to wait longer, possibly at a detriment to their health. But, when we see you come out of the cubicle, we have to show you the same respect that we want to be given. We don't have a right to challenge, because how do we know if you are disabled or not. The responsibility therefore lies with the able bodied person to do the right thing. To give up a seat on the bus when somebody asks, even if you don't think they look disabled.
To realise that your "tired" is significantly different from my fatigued and that maybe you can manage the extra 20m to the normal toilets and let me use the accessible loos. To not stare when I get out of a swimming pool without use of a mobility aid, but then walk in to an accessible changing room.

We have to trust you and we need you to trust us.

Friday, 17 June 2016

Britain, you have hurt me

Yesterday I found myself posting twice to Tumblr about how my country had disappointed and hurt me. Twice, in one day, about two separate incidents.

The first:
Two rival political factions battling on the Thames with water hoses should have filled me with glee yesterday. Instead I found myself avoiding all mention of it and actually becoming increasingly angry.
They have already undermined an incredibly nuanced complex and far reaching political issue by turning it in to a populist issue so then to have official representatives of the campaigns literally turn it in to a water fight was beyond distasteful.
This is an issue that could have a huge impact on the lives of thousands of people. It could have huge lasting ramifications on how the country is run and the legal safe guarding of some of societies more vulnerable people. and they turned it in to a water fight.
They are making a mockery of the democratic process in this country. They are making a joke out of a serious issue. By making it in to a farce and a game they are taking power away from the voting public.
To quote a friend
“ Fucking millionaires playing games while the people of the U.K. suffer the ill effects - perfect illustration of politics in the UK too often these days. “
And the second:
I am hurting today.
I was already hurting following the Pulse shooting. I was hurting following the mockery of democracy and our population by prominent politicians.
Now I am hurting because here, in the county I live in, a politician by the name of Jo Cox, was murdered. She wasn’t just murdered. She was assassinated in an act of domestic terrorism.
They were shot by somebody shouting Britain First. Whether it had the backing of that hate group or not doesn’t matter. She was shot because that man believed that he should and should do so because of his Britain First aligned views.
That makes it domestic terrorism.
A woman was killed because of hatred and xenophobia and bigotry.
Even if if this was one idiot acting alone his actions have come from a place that is deliberately trying to divide the nation stir up “patriotism” and has encouraged xenophobia and right wing nationalism. It is shameful. I am ashamed that my passport says British just like that murder’s and just like the people, the politicians, who have encouraged an environment where that sort of murderous hatred can thrive.
Now, let's set things straight, these aren't the first time I have felt let down and hurt by my country. When government proposed and voted on cutting ESA payments yet again, that hurt me. When the government proposed a wage cap on non-EU immigrants, that hurt me. Every time a newspaper printed false information about the number of "cheating" benefit claimants, that hurt me. When doctors pleaded not to have a dangerous and inhumane contract forced through and were ignored and belittled, that hurt me. When in May last year, on my birthday no less, the country voted in a government who had continuously torn apart the country, taken money from people who needed it, grown fat for the suffering of others and who had repeatedly told me and thousands like me that I just wasn't trying hard enough, I was hurt.

So what was different yesterday? They say that people with addiction have to hit rock bottom before they can better, and that when you think they have hit that low point they will always find one more thing that is even lower. Well yesterday was my rock bottom. I thought we had hit it so many times before, but yesterday was just that little bit more.

On June 15th as two flotillas of boats representing official government campaigns, hosting well known politicians, met on the Thames to blare music and engage in a water fight we were shown the utter contempt that our government shows for the population and our democratic process. Until now they had at least hidden behind official language, gone through the proper motions of dressing their idiocy up as official business. They had at least maintained the pretence of acting democratically and allowing the population to take part in a democratic government, had at least pretended that the informed view of the people was relevant and that they didn't just do as they pleased.
But, as they turned a serious referendum into a pantomime, they showed that their only concern is to keep the population entertained and sated, like docile infants, whilst they focus on their own concerns. They sneered at us. They showed us contempt.

Then on June 16th, MP Jo Cox was murdered by a man claimed to be shouting "Britain First" the name of a violent, racist bigoted far right group. Jo Cox was infamous in parliament for being fiercely in favour of supporting refugees and migrants. She was a staunch supporter of ethnic diversity in the UK as well as being pro EU. Whilst Britain First have of course denounced the murder in official statements, a cursory look at their online groups and forums, as well as subsidiary groups and other far right groups on FB will show that there are many who are vocally celebrating her death, who are congratulating the murder on his work and saying that this is what "needed to be done".

This wasn't a murder carried out in isolation. This wasn't a "mad man". This was a murder, an assassination, that had an increasingly right wing, xenophobic, hate-filled culture to thrive in.
That's why these two incidents aren't entirely separate. A water fight on the Thames and a brutal murder are both born of the same political climate.
We have a government that actively encourages dividing the nation on moral and ideological ground. We have a government that actively encourages and perpetuates racism and xenophobia through falsehoods and misinformation as a part of their political campaigns. We have a government that supports and benefits from a right wing press and that stands by and allows without repercussion , lies and blatant racist slurs to be published. We have a government that actively fear mongers, and reduces complex issues to single inflammatory stories so that they can distract attention away from country crippling policy. We have a government that does not want to public honestly engaged in politics for fear that their power would be undone. We have a government that ignores expert reports, consultation and inquiry when they feel it doesn't fit some mythical "bigger picture". They make villains out of ordinary people and those in dire need so that they can line their pockets with ill gotten profit and then blame the straw-man they have created.

I have been let down by a government that reduces serious debate to a floating pantomime and creates a culture that encourages the murder of an innocent woman, all in the name of their so called democracy.

So shameless in their pursuit of profit and power they do not care for the figurative death of democracy and the literal death of an MP.

Saturday, 11 June 2016