Belated BADD Post: Mobility Scooters and the Posts I Didn't Write

This is a post about mobility scooters, but it's also about the posts I didn't write.

First some history about me and Blogging Against Disablism Day; this is my first time blogging, even though I've been aware of it for several years now, have admired and read many of the posts generated. But when I'd sit down to write my own post I'd get brainfogged or too fatigued or just succumb to my natural talent for procrastination (this, and my total failure to do html properly, is why this post is so late).

Or I'd get scared.

See, the things I want to write about are difficult. I want to write about the numerous failings of ATOS medicals, benefits cuts, about the demonization of benefit applicants in the media, about the substandard treatment of people with ME by the NHS, about the consultant in rehabilitative medicine who told me I was "mentally weak", about how research has focused on pathologising the personalities and coping strategies of people with ME instead of helping us, about how stories about ME are covered in the media, leading to headlines like the one I woke up to in my paper one morning: "Got ME? Just get out and exercise say scientists" (as if it were that simple).

(Funnily enough the first two and the last have a factor in common, the Department of Work and Pensions, which part funded the study the article was reporting on. All I can say is that I trust the DWP about as far as I could throw them, bearing in mind that even before I got sick and we did shot put in PE I had to be given an extra light shot and could only throw it one humiliating centimetre.)

But I can't think about that stuff for too long without either tears or furious anger. I'm going through a benefits appeal at the moment and every time I think about it I want to vomit with nerves. When I think about writing about it, I hear all the naysayers in my head start up, telling me that I'm not sick enough, that I don't deserve benefits, that it's all in my head, that ME isn't a real disease and certainly isn't a disability. Run along now, they say, get on your bike and look for work. You know the kind of things I mean, sentiments so ingrained that they don't even need to be said aloud, but are anyway, filling up online comments sections like they're new ideas that no one has ever thought of before or dared to say.

That's what ableism does. It marginalises disabled people, takes away what we need to survive and then presents us with a dilemma: either be silent and have that taken as your consent or speak up and have to face up to the emotional effects of justifying your existence (which may adversely affect your condition; I have an anxiety disorder and stress and high emotion are bad for my ME).

I won't be silent, but I have to take small steps. So I decided to write about mobility scooters, which I actually take a lot of pleasure rather than stress from. So I thought I'd produce a guide for non-disabled people interacting with mobility scooter users., in handy dos and don’ts style format, with much statement of what should be bloody obvious.

Most of these apply to wheelchair and walker users as well, but I’m saying mobility scooters because that’s what I use (and I want to raise awareness of the ableism we face by illustrating some of the things that have happened to me) and also because a spate of terrible articles from around the world stigmatizing mobility scooter users. So without further ado:

Mobility Scooter Etiquette

Do look where you're going. It's easy to miss scooters if you only look at your eye level and it’s hard to negotiate out the way of people who never see you, especially in crowds.

Do move out the way. When I went to university one of the parts I dreaded most was going home in the afternoon. People would cluster around the bus stops, leaving space on for one person to go, with people walking in both directions. I would wait as streams of people would pass from each side, but it would often take a huge amount of time before anyone any one would move to let me go.

In another incident, from the first time I used a scooter alone, two people were walking straight at me and didn’t seem to acknowledge my presence at all. I moved to the side. “We nearly got run over,” one of them said to the other, even though it was more a case of them not looking where they were going. For some reason if you use a mobility scooter it’s always your responsibility to move away.

Do offer to help us if we appear to be having difficulties. If we say we’re fine, thanks, then just accept that and move on.

Do call out others if they make prejudiced comments about mobility scooter users or do any of the don’ts listed. It gets tiring always having to be the one to call out ableism. Currently non-disabled people have an advantage in that they don’t have the constraints on their energy that some impairments give you and are more likely to be listened to because of their privilege.

Do prioritise accessibility. Implement it in your businesses, your planned events, join in campaigns for it. Here are two good links about this huge topic:

Making space for wheelchairs and scooters by Jesse the K

Accessibility by cripchick

And no, disabled people “just asking” for poor accessibility to be corrected is not a viable solution, as it puts already energy depleted people in the line of having to face a possibly hostile reception (and just asking in itself can be hard for people who also have social anxiety).

Do consider how your companion who uses a mobility scooter will get around. There’s nothing worse than all your friends crossing the road, only for you to still be sat there because there’s no curb cut. (My friends don’t do this, but it is easily done.)

Do accept that we have just as much right to take up space as people walking do. One of the worst things anyone has ever said behind my back (I didn’t hear, my friend who was also there reported this back to me) was a man in a market place I was in who snidely commented to his wife that “they should pedestrianize this place and get those things out of here”. Such a stance would, of course, mean that I would never be able to go to that market alone again. He’s an extreme example, but I often feel that others have an attitude that I am an inconvenience that they merely tolerate.

Do talk directly to us and not the people with us.

Don't stare. It’s rude and becomes wearing when you encounter it everywhere you go.

Don't make jokes like "have you got a license for that?", “I’ll race you” or "I'm going to have give you a speeding ticket." They are unfunny and patronising; I am a grown woman going about my day and not a figure of amusement for others. Bear in mind that while you may have only just thought of this we have heard them several times over and aren’t going to be bowled over by your wit, much as my friend who is really tall isn’t amused by being asked “how’s the weather up there?” for the umpteenth time.

Don’t touch us without permission, even if you are “only trying to help”. Don’t touch anyone without their permission. It should be obvious, but when it comes to marginalised people’s bodies it gets ignored. When I went to complain about some lifts in Marks and Spencer’s a member of staff patted me on the side while showing me to the other lifts. I have all-over body pain and sometimes can’t let even my friends and family hug me. Other people have issues with triggers or sensory integration.

Don’t jump out the way dramatically. People leap off the pavement and spread their arms with an expectant flourish. This is annoying and I always detect some sarcasm behind it, like they think I’m about to flatten them.

Don’t patronise or baby talk to us. One thing that’s distressing about this is it’s hard to quantify exactly whether it’s happening or not. Once I had a conversation with a girl as I was going up the road to university. Her second question to me, delivered slowly and in a tone of surprise, was “you go to university?” Considering we’d both just come out of student accommodation, were heading towards the university, were in an area almost wholly made up of students and I was wearing a backpack, I perceived her as having assumed I was unintelligent due to my disability. But who knows what her intentions were?

Don’t assume that the people with us are our caregivers. Funny thing is that when this happened to me, the assumed non-disabled “caregiver” of me and my friend, who is a wheelchair user, is a disabled person who at the time was receiving more support than me.

Don't block pavements or curb cuts. Don’t block them with rubbish, overgrown shrubbery or cars. See lauredhel’s post for examples. If we have to ride onto the road or uneven ground some of us can suffer pain (I know that being jostled about is the exact opposite of what my myalgia wants) or be killed by traffic.

Don't litter. There are a number of reasons not to do this, but one of them is because it can obstruct the way for mobility scooters, get caught in our wheels and maybe even damage the scooter and immobilise us.

Don't pry into why we use mobility scooters. Curiosity’s fine, I’m curious about a lot of things too (why would anyone want to buy a decorative loo roll holder? how do other people keep their homes so neat? what would happen if Prince Phillip met Sarah Palin?), but you are not entitled to have your curiosity satisfied. It’s generally accepted that many people (for very good reasons) want to keep their medical details personal. Most of us understand this when it comes to standing far back from the reception desk at the doctors or the dispensing counter at a pharmacy, yet this goes out the window when questioning complete strangers about “what is wrong with you”.

Personally sometimes I don’t enjoy talking about ME with strangers because of reactions like “oh, I get tired too”, “my cousin’s best friend’s hairdresser had that and she recovered by eating snake oil flavoured ice cream” or “I knew someone who had that, but it turned out she was just lazy.” That and the fact it’s repetitive to have to explain your disability to every single person you meet, when maybe you’d rather talk about something else. If you need a conversation starter try the weather (yes, I’m British) or what’s on the TV or radio.

Don't abuse or mock fat people using scooters. Other people’s weight is not your business. People of all sizes have disabilities and deserve to be able to get around.

Don’t tell us about runs in you have had with other scooter users. Do you tell other walkers about all the walking people who have bumped into you?

Don’t steal or joyride scooters. Obviously you shouldn’t steal anything, but if you steal someone’s mobility device you are robbing of their mobility.

Don't offer "miracle cures" to us because we use a scooter. You are not a stranger’s doctor, you don’t know people’s medical history or what they’ve tried before and you don’t know what the psychological effect of these constant “helpful suggestions” can be. You don’t even know whether the person in question would appreciate a cure for their disabilities.

Don't assume it's a tragedy if someone uses a scooter. I love my scooter, it’s a fabulous tool that allows me to get around without exacerbating my pain or fatigue, or when I can’t co-ordinate my legs properly. Appearing normal is not the most important thing. I enjoy not being stuck at home all the time or relying on others to drive me tiny distances.

Don’t consider getting a mobility scooter to be giving in. Pretty similar to the above, although this judgment is more concerned about dependency and weakness. Yes, I can technically walk; it’s just very difficult for long periods of time. Do you always do things the hard way or do use technology to make things easier? Dig your own well instead of getting water from the tap? Handwrite instead of typing? Walk instead of using the car? Didn’t think so. Why are the tools disabled people use different from yours?

Don't assume someone doesn't need a scooter because of their age, appearance or their other physical activities. I’m twenty years old, limp/ walk like I’m drunk only intermittently and often park my scooter outside somewhere inaccessible and walk in, sometimes without a cane. I use a scooter because of fatigue, pain and co-ordination and balance problems and there are many other invisible reasons why someone might use one.

Don’t concern troll about how mobility scooters will stop people exercising. Some people can’t exercise due to their disabilities and taking away their mobility scooters will only harm their health (in terms of causing falls and confining to their homes so they miss medical appointments and the health benefits of vitamin D, leisure activities and social interaction). For some people a mobility scooter will increase the amount of exercise they do; for example a woman with MS, once she is free from the fatigue from walking around during the weekly shop, may have the energy to do a water aerobics class that suits her body better. And some people, disabled or not, just won’t exercise. You can’t force them. Do you suggest taking away the cars of able-bodied people because it will stop them from walking? Health being a social obligation is part and parcell of the marginalization of disabled people.