How to respond when you’re asked about wheelchair access

A black and white photo showing a white person in an electric wheelchair in the centre of the photo. Behind the person and along the length of the image are blurred bushes, showing that the electric wheelchair is moving rapidly.

When ostensibly ‘social justice’ or ‘left wing’ events don’t put access details on their websites, they’re functionally excluding disabled people – but how should you respond when asked about wheelchair access?

When I have to email your space or event to ask you about wheelchair access, I’m already annoyed. I’m annoyed because you should be advertising this already. You should already be giving basic information about access and someone to contact for more information. I shouldn’t have to describe my access needs to you for you to tell me what your access information is.

You should be saying:

-Whether you have steps/stairs and how many

-Whether you have a handrail

-Whether you have a lift, and what weight limit it has

-Whether you have a ramp and what weight limit it has

-How steep the ramp is (you can just show this in the photo)

-A photo of the ramp (to show that it’s actually usable)

-Whether the toilets are literally wheelchair accessible*

-Whether the toilets are adapted*

-Whether it is possible to fully experience the event whilst being in a wheelchair

If the venue isn’t wheelchair accessible I need to know:

-What you’re doing to change that

-When it will be changed by

-What you will do in future to avoid using inaccessible venues / being an inaccessible venue

What I don’t want to hear is:

-How old the building is

-Why you have to be using that building

-Why you didn’t expect wheelchair users to want to attend

-How at some vague point in the future you might buy a ramp

-How it’s wheelchair accessible if you can walk

-How it’s wheelchair accessible if the person in a wheelchair literally consents to being picked up and carried in order to enter – if you wouldn’t ask this of the other attendees, it is completely inappropriate to ask it of wheelchair users

-How it’s accessible because you own a ramp (without a photo to show that this ramp is useable)

-How dreadfully sorry you are that you’re not accessible – I don’t care – if you are literally barring wheelchair users from your space / event, I’m not bothered by you being sorry, unless you’re sorry and doing something about improving access

*’Wheelchair accessible’ means ‘you can literally get a wheelchair there’, ‘wheelchair adapted’ means ‘necessary adaptations to make this easier for a wheelchair user to use – e.g. grab rails, transfer bars are in place’

This guide from Access is Everything will help you figure out what to put on your event page or website.

The Guardian: We are told we are a burden: legalising assisted suicide would further devalue our lives

Noel Conway, a campaigner for assisted suicide, outside the High Court with other people
The retired lecturer Noel Conway, who has motor neurone disease, outside the high court, where he is challenging the UK’s ban on assisted dying. Photograph: Stefan Rousseau/PA

The views in this article are entirely my own and do not reflect that of any organisation I work with. They should be considered reflective of my position at the time of writing, which may have since changed.

The massacre of the disabled: Sagamihara, infanticide, abortion and assisted suicide

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A mourner brings flowers on Wednesday to the care home where disabled residents were massacred a day earlier in Sagamihara, Kangawa Prefecture. | REUTERS

The views in this article are entirely my own and do not reflect that of any organisation I work with. They should be considered reflective of my position at the time of writing, which may have since changed.

[Description: there is a grey wall with writing on it in Japanese in a lighter grey. Against the wall is a table covered in a white tablecloth. On the table are several bunches of flowers. An individual in front of the table dressed in black, with shortish black hair, and carrying a black shoulder bag holds a bunch of flowers, which one presumes they are about to place on the table]

On the 25th of July this year, 19 people were murdered in Sagamihara, Japan, in their worst mass murder since World War II. In Britain, it’s clear that the murders of white people (Paris, Nice, Belgium, Orlando, Munich…) by Muslim terrorists are more important than the murders of BME people (Kabul, Anbar, Baghdad, Istanbul, Manbij…) or murders by non-Muslim terrorists (police killings in the USA, Lord’s Resistance Army in central Africa, islamophobic murders of Muslims, the worldwide epidemic of beating, imprisonment, torture, and murder of women..). However, the attack in Japan came unexpectedly in a stable democracy that is not at war (attacks in countries at war are obviously just as bad, but more predictable), and as a result a response that recognised the horror of it, and expressed sympathy and solidarity with the victims could be expected. This didn’t happen. There was no great outpouring of emotion for the 19 people dead and the 26 people wounded. When the attack on Pulse in Orlando happened, targeted at LGBT people, the response came from people outside the community as well as inside it, but after Sagamihara, the vast majority of the response has been from disabled people. This is probably a combination of racism (the victims being BME) and disablism* – the victims were disabled people living in a residential community.

The attacker was removed from his job at the residence a few months previously because he was considered to be a threat to the residents. He had written to the speaker of the lower house of the Japanese parliament detailing his plan to murder disabled people, and had been briefly hospitalised before being released. His own conception of his crimes was  brutal – he thought “it better that disabled people disappear”, and his letter stated that that when disabled people were unable to carry out household and social activities their guardians should be able to have them “euthanised”. He claimed sympathy for “the tired faces of guardians, [and] the dull eyes of caregivers” and believed murdering disabled people would relieve this because “the disabled can only create misery”. He asked that following the murders he be given a new identity, and payment, and appeared to believe that this was reasonable to request. He had discussed killing disabled people with his friends and asked them to join him.

The Japan Times referred to the massacre as a mercy killing, implying that the lives of disabled people are so dreadful that killing them (us) is an act of mercy. This attitude is reflected elsewhere, for example when Tania Clarence murdered her three children with Spinal Muscular Atrophy, she was described as “loving and caring for the children” and “depressed and overwhelmed”, in articles that implied no judgement on her for the murders, or when Janice Albury Thompson murdered her autistic daughter Casey Albury in New Zealand and served five months in prison before being released after an outcry of public sympathy for her. Having a disabled child is treated in the media as being so difficult and overwhelming, that murdering them is the best thing their parents can do for them – and we hear far more about the inner life of the parent than we do that of the child. The media justification of these murders contributes to an environment where these killings are considered acceptable responses to the challenge of caring for someone disabled. Could that have contributed to the Sagamihara murders? It’s impossible to say, but almost certainly the constant drip feed of media supportive of parents killing disabled children, using language that reflects that used by the murderer in Japan, will have contributed to the lack of response to the killings.

assisted-suicide-cartoon
Assisted suicide cartoon – Disabled People Against Cuts

[Description: A cartoon showing the corner of a building. On the left is a flight of stairs ending in a door marked “Suicide Prevention Program”. On the right is a disabled sign (a stylised wheelchair), and a ramp up to a door marked “Assisted Suicide”. In front of the bulding, a person in an electric wheelchair is positioned as if planning to ascend the ramp to the “Assisted Suicide” door, but the person is looking instead at the “Suicide Prevention” door, which is not accessible to wheelchair users]

Where else have we heard that kind of language? In two places – the discussions about assisted suicide, and about the abortion of disabled foetuses. Non-disabled people will talk about assisted suicide, saying that if they were severely disabled they would prefer to be dead. I might have said that before becoming severely disabled, but the experience has changed my mind. These people use examples like Stephen Hawking to justify their demand for assisted suicide, with no idea of how offensive that is. We hear that disabled people would prefer not to be ‘burdens’ on their family and friends, that they (we) would want to die before losing their (our) dignity and independence. Whilst there is an outcry regarding low levels of investment in mental health services, and advertisements for calling the Samaritans if suicidal are all over the train network, there is an argument that in the case of disabled people all this should be suspended, we should simply be helped to die. Advocates for this say that it should be a free choice, with doctors confirming that the person is not under pressure, but pressure doesn’t have to be overt to be significant. In a time when there are massive cuts to social services and people’s care plans, an independent life is threatened, and the support people need to maintain what they consider to be dignity is disappeared. Assisted suicide is a cheap option when compared to care and health treatment – no wonder it’s popular as a concept in a time of austerity. Just as the Sagamihara killer believed the murder of disabled people “may be able to revitalise the world economy”, so does assisted suicide offer to cut the cost of caring for the disabled drastically. In an ideal world, where disabled people have access to all the care, treatment, and equipment they need to live their best possible life, and where disabled people are not considered burdens in any way, I would be less opposed to assisted suicide, but in the current world it’s a cop-out, avoiding really changing society to prevent it disabling people so significantly that death feels like their only option.

I believe abortion should be completely legal and publicly funded, including in the case of disabled foetuses, but I am uncomfortable on a societal level with the message that disabled babies should be aborted, even as I support individual women who make that choice. Disabled people rate their quality of life as higher than their caregivers expect it to be, but it is often on perceived quality of life grounds that women have disabled foetuses aborted. Caring for a disabled child in a society that does not provide all the necessary resources is a challenge, and women may well feel that they couldn’t face this – and disabled children do not fare well in the care system or while awaiting adoption. Under these circumstances it is understandable that women abort disabled foetuses, on an individual level. On a wider level, however, it is eugenics and a genocide of disabled people perpetrated by the governments that do not offer women all the services and support they might require to raise a disabled child. The justification of abortion of disabled foetuses on a systemic level again contributes to the devaluation of our lives, and an environment where disabled people are considered a burden first and foremost, rather than what we can offer to our families and the world being seen as the most important thing about us.

So why has the world remained silent? Because the massacre of disabled people is considered more justifiable than other murders. The intersection of disablism and racism positions the victims as Other in two significant ways, reducing empathy with them. The linguistic environment we inhabit with regard to disability is one focused around burdens, around justifying infanticides, around believing we would be better off dead than disabled. All the Sagamihara killer did was take this reasoning to its extreme limit.

*I try to use “disablism” rather than “ablism” because the discrimination isn’t on grounds of ability, but because the targets of it are disabled.

Loss, Anger, and the Cheerful Cripple

A blue sign showing a wheelchair user with a white line crossing them, as if to say "no disabled"

Coming to terms with acquired impairment is a process that takes time

This is probably far more about acquiring disability than being born with it

Becoming disabled (or a significant change in the level of your impairment such that it affects your social relationships in a way it hasn’t previously) is pretty unpleasant for the person undergoing it. There may be the shock and trauma of having to, maybe quite suddenly, rearrange your life. The grief of losing abilities you used to have. The discomfort of accepting help you wouldn’t have had to previously. Being forced to go from being a private person to having strangers wash your genitals, and friends dress and undress you. The desperation at how helpless you might find yourself is a terrifying maw. The anger at the fate, at the world, the search for meaning, the possible realisation for you that there is no meaning, (or that there is, and you’re part of a plan in which your pain seems key). The frustration at organisation (high levels of physical impairment require a lot of organisation), the cost of medication, the cost of everything, whether the cost is in time, or energy, or pain, or money, the realisation that you have limits that you didn’t have before, limits most people simply cannot understand (‘but surely that can’t make you feel like this…!’), I don’t have to go on – if you’ve experienced this you’ll follow despite some differences, and if you haven’t, then just try, for a moment to imagine it, put yourself in that emotional whirlpool of pain, exhaustion, and all those feelings. Try.

Now imagine if everyone went out every day showing exactly how we feel. Maybe that’d be a good step forward for society – I can’t judge on that front, though it seems a step forward – but as it stands those of us accustoming ourselves to durability having a severely increased impact on our lives would be trampled by the world because expressing emotions also often leaves you far more emotionally raw. However, after most (though by no means all) traumatic events (I most liken this to grief and loss) society allows people some kind of emotional space to heal, and friends are often there to listen. With disability, I’ve found it doesn’t. Because there are Other People. Other People look at you and realise you acquired a disability. They may understand why, they may not, (you may, you may not), but this is quite frightening on one level for them. It’s like someone your age dying – it could have been you. If it wasn’t you then you’re probably quite relieved. Other People look at a newly more disabled friend, and realise that it could have been them, only… it wasn’t. Other People are pretty terrified by this often (according to my research of… asking Other People). They’re slightly shaken that they dodged the bullet. They need comfort. They need to know that life is going on. They need to know that it isn’t all that bad. Just in case. So they don’t have to worry.

So far, this is alright, albeit uncomfortable, but then Other People come to us with our chang[ed|ing] disabilities and all the accompanied internal chaos for comfort. Not necessarily explicitly – but now that they’ve seen this ‘horrible thing’ (someone becoming disabled) happen, they need to see that it’s alright. It’s obvious to Other People that our lives have changed a lot and they need to know that we’re okay, and cheerful, that we still come out, and see them, that we’re doing ‘fine’ when they ask – maybe a bit ‘tired’ from time to time, but that we don’t say so often, they need to be reminded that we’re ‘looking well today’ and if we’re really not, they then get concerned and need reminding that this aspect of the disability is small and easily cured while the whole picture sits in the room like an elephant with four wheels and a cushion. They need to have us tell them that we’re okay to reassure themselves that we’re okay, that they’re being Good Friends (not just being Other People) and most of all that if it happened to them like it did to us they’d cope with it as well as they think we are coping with it.

We get forced to become the Cheerful Cripple, a trope in which whilst we are disabled we are also happy and positive about it and never sad or depressed by our impairments. This expectation is also there to remind us that this is the only way they can adapt to our changes – by acting like there’s nothing emotionally wrong. If there were something – if we were upset by it Other People like to think that they would want to know but the acquisition of physical impairment and its impression on mental health (especially for those of us who had mental illnesses as well to start with) is so far out of their frame of reference that they feel completely incapable of framing a response to our emotions, much like we may have struggled to frame the emotions ourselves. I know at times I’ve tried to talk to people with other types of disability that are not acquired physical mobility impairments and they’ve been like a lot of Other People, either having dealt with this so long ago they’ve forgotten it, or more often seeing it as an alien experience.

It’s okay for people to react in different ways and everyone is entitled to their own emotions, but the pressure a reaction of expecting us to be positive places on disabled people is immense. Rather than being allowed to be however we are, and expressly to work through feelings about an emotional response somewhat analogous to grief, we’re expected always to seem content with our lot so that our friends don’t have to admit that they’re frightened – for us, but also about how this could be them and what would they have done and how would they cope. Instead we are forced by Other People to be positive about it so they don’t have to worry about our feelings but also about what theirs would be. It’s not okay to put that pressure on someone regardless of their situation but especially when they are experiencing a major, ongoing life trauma that would impact on them significantly,

What Other People ultimately do is force us to appear happy and positive, even by expectation and minor reaction on their part, rather than allowing us to be honest about our lives and them to face their fears. And it forces us to hide that anger, that collection of emotional responses that we have to our disabilities yet again, to lose yet another of those shrinking places where we might have hoped to find not pity (which is what we get when they realise we can’t do things we used to do freely) but a friendship with substance.

People tell me there’s a point they reach where they’re at peace with disability, but the people I’ve heard that from don’t have conditions that are ever-worsening – every day, week, month, another step iller with no idea when it will end. People tell me that even in this situation I will reach peace, that I have to be patient, I’ll feel better soon. I hope they’re right. I really goddamn hope that they’re right that there is peace, but for as long as there isn’t, we’re allowed to be angry.

We’re allowed to feel like our lives have been stolen, we’re allowed to hurt, and to curse the universe and ourselves and our bodies, and we’re allowed to be shocked, and scared for the future, and if we’re not serenely taking to our beds, or being happy cripples, ask yourself what to expect, and whether you’re capable of standing with your friend emotionally and honestly where you can. If you can’t do that then admit it to us, don’t force us to show you the right emotions to comfort you on the topic. My impaired friends, please, let yourself feel however you feel and as much as you feel about being disabled, even if you’re scared it’ll lose you friends to feel it. If you keep masking emotions this vast it’ll damage you and your friendship will grow a damaged core wherein the emotional truth about such a huge part of your life is hidden.

You will probably both gain and lose friends over a major change in your disability but you will probably have fewer of them afterwards – people who couldn’t cope with you not being a Cheerful Cripple or with the new limitations your body places on the friendship. However you’ll be left with the kind of friends like the ones who dropped all their weekend plans to stay at mine so I would have company and an eye kept on me as I lay vomiting through a weekend as I reacted to a medication change. Losing friends is agonising, especially losing them to something already this traumatic and difficult to manage but please let your friends be honest with and about themselves, their boundaries, and their bodies – and try it yourself. I’ve heard it can be nice (I’m being a bit silly here but also trying to acknowledge that to a point the more impaired one is then the more pressure there can be on one’s boundaries because they differ so far from the ‘normal’ boundaries and that it is typically good to respect your own boundaries.)