How using an electric wheelchair can be exhausting (but I still love mine)

Having a disability can mean that simply going outside your home is more taxing than for non disabled people.

There are different things which take their toll for visible and invisible disabilities but for this blog post I am going to focus on my experience as an electric wheelchair user.

I don’t want this post to put anyone off using a wheelchair, they are great for enabling freedom and independence.  Rather I just want people to think about how they treat friends, family and strangers they pass in the street.

It starts before you even leave the house…

There is the planning required before you leave.  You have to ensure your chair is charged.  I can’t unplug my charger so I have to make sure that it’s unplugged when a carer is here.

You have to think about how you are getting to wherever you’re going.  If you want to go by taxi or train you have to book that in advance.  You can’t be a spontaneous wheelchair user unless you have a car…

You have to check access in advance and often this isn’t information available online which means you have to contact the venue which can take it’s own toll.

You have to get into your chair and in my case, most of the year get into my wheelchair cosy, which is considerably more involved than just grabbing a coat and walking out.  I also have a blanket which gets tucked in around me under the wheelchair cosy as I get so cold.

If you know the area, you have to mentally run through what you know about drop kerbs, pedestrain crossings, shop entrances etc.

If you don’t know the area you have to just wait and see which can be exhausting.  You’re constantly looking for drop kerbs and half waiting to get stuck on a pavement and have to retrace your route.

And then there’s illegally parked vehicles blocking pavements or drop kerbs.  Wheely bins and recycling boxes left in the way.  Yesterday (whilst I was running late for my art class) I had the triple whammy of a blocked dropkerb, a lorry unloading onto the pavement and scaffolding.  And I was made to feel shit because I wanted to get past.

You have to make sure other people do not walk into you as they stare at their phone because then they get pissed at you.  I have had someone get annoyed with me because my chair was quiet and she didn’t hear me coming.  I wonder if she’d like me to wear a bell round my neck?

You get stuck behind people who are weaving all over the path and ignoring your polite excuse mes.  As a wheelchair user, you can’t possibly be in a hurry.

And once you’re where you’re going, you have to ask shops to get out the ramp, if they have one, or strangers to reach things off the higher shelves.  If you try and go for a coffee, you often have to get help moving chairs or carrying drinks.

If there isn’t an appropriate toilet, you mentally have to pace your fluid intake.  If there is an appropriate toilet, you have to go through the process of getting out of your wheelchair and accessories and back in again after.

You have to deal with all the comments from strangers.  “Witty” jokes, inapprioriate prying questions, being told how brave you are etc.  You have to deal with the “Does s/he take sugar” approach*.  You get stared at and pitied.  You get utterly unhelpful suggestions to cure your disability.  And offers of prayer.

You are crotch and bag height and have to avoid getting hit.

You have the perfect opportuntity to take all your belongings out with you – just load up the back of the chair – but unless you can easily get in and out of your chair, you can’t actually reach any of your stuff.

Obviously you get cold because you are sitting still and you get wet when it rains if, like me, you can’t put on your own wheelchair waterproof.  And the rain drips down the chair and down your back and onto your seat…

None of this is to say I don’t like my electric wheelchair, I love it, just be aware of all the mental and emotional energy it takes for me to leave the house.  If I say I’d rather meet you for coffee at mine than go out, it’s not because I don’t want to do that interesting thing you suggested, it’s just that sometime the task feels too great.

And this is just the wheelchair related aspects of leaving the house with a disability.  And I’ve not even touched on the coming to terms with needing a wheelchair side of things…

*People talking to the person with the wheelchair user about the wheelchair user instead the wheelchair user themselves.

Trees: a year long project

So this year I have had a tree project running along in the background.  Dipping into it now and then, pondering it when I awake in the night, looking out for ideas in my day to day life.  I’ve really enjoyed it.  Having a longer term project on the go.  And I like the seasonality of it.

So far we’ve had:

Spring – a large canvas collage and mini tree book as well as research and idea storming

Summer – a deck of tree oracle cards made from photos, some taken this year, others taken previously

Autumn – this is stil in progress but the hope is it will turn into something along the lines of:

using leaves that I’ve preserved using glycerin

Winter – currently unclear but quite possibly involving sticks…

And next year I’m thinking butterflies, breaking it down into eggs, caterpillers, metamorphosis and butterflies.  Have you ever looked at butterfly eggs?  They’re suprisingly beautiful and intriguing.  I’m trying not to jump ahead and start now although I do have a pinterest board where I am collecting images.  It’s so easy to get caught up in the heady fun of new ideas and abandon existing projects…!

Seasonal Affective Disorder

As we head into the colder, darker months, I am trying to come up with a plan of attack for my SAD.

I have a SAD wake up light in my bedroom which makes opening your eyes in the morning a little easier.  I also have a SAD lamp on a timer in my living room.  When I was working I had my lamp next to where I had my morning coffee.

Try and get into the sun; getting as much natural sunlight is an even better option but is often not as easy as it sounds.  As well as logistical issues, there’s the complication that SAD makes you lethargic and makes you feel like you can’t actually be bothered to go out.

Which is where routine and planning comes in.  If you do something every day or every Wednesday or whatever hopefully it will become habit and you’ll be more likely to do it even if you can’t be bothered.  Planning specifics also helps.  If you think you’ll go for a walk one day you might but if you decide you’ll go for a walk to the coffee shop on Monday lunch break you’re more likely to do it.

Exercise is supposed to be good, and you can link it with being outside, but not an option open to all of us.

When you’re feeling low it can be really easy to get into the habit of eating lots of comfort food, fast food or no food.  None of which are going to help your mood.  Eating well sounds easy but I know it’s hard.  Try batch cooking and freezing.  Plan ahead.  Decide what you’re going to eat each day and do what you can to make it easy for yourself.  If prechopped vegetables mean you’re more likely to eat them, go for it.  If shop bought soup is going to mean you’re more likely to eat, do it.  You could also look at vitamin tablets.

If you can, try and get into a healthy sleep routine to ensure you get enough (but try and avoid too much!) sleep.  A disrupted body clock is one of the possible causes of SAD.

Ask for help with tasks you find difficult.  For example maybe a friend could cook an extra portion of a meal and drop it round.  Maybe someone could pick up some things from the supermarket.  Or help you tidy your home.  It can be hard to ask for help but often people don’t know how to help even though they want to.

Medication can also help and if you are experiencing symptoms of SAD please talk to your dr.

I am bisexual (another rant…)

Those of you unfortunate enough to follow me on twitter may have seen my incoherant rant about a former friend.  We were close in high school but haven’t really been in touch since.  She is now married with children and her husband is using facebook to spread his homophobic, transphobic beliefs.  I don’t know about my former friend, her facebook profile is private.

This guy, who is now married to my ex close friend, believes I am a danger to children.  I am what is wrong with today’s world.  I am evil.  I am going to hell.

Simply because I am attracted to people regardless of their gender.

I am bisexual and I am not a risk to children.  I am not causing the world to go to pieces.  I am not evil.  I may be going to hell, who knows, but I don’t want to go to a heaven which denies people’s sexuality.

Like many people, this guy uses the bible to justify his attitudes. Which is crap. And President Bartlet articulates it much better than I can:

Transcript (taken from Wiki Quotes so may not be 100% spot on)

Bartlet: I like your show. I like how you call homosexuality an abomination.
Dr. Jenna Jacobs: I don’t say homosexuality is an abomination, Mr. President. The Bible does.
President Josiah Bartlet: Yes it does. Leviticus.
Dr. Jenna Jacobs: 18:22.
President Josiah Bartlet: Chapter and verse. I wanted to ask you a couple of questions while I have you here. I’m interested in selling my youngest daughter into slavery as sanctioned in Exodus 21:7. She’s a Georgetown sophomore, speaks fluent Italian, always cleared the table when it was her turn. What would a good price for her be? While thinking about that, can I ask another?
My Chief of Staff Leo McGarry insists on working on the Sabbath. Exodus 35:2 clearly says he should be put to death. Am I morally obligated to kill him myself or is it okay to call the police?
Here’s one that’s really important because we’ve got a lot of sports fans in this town: touching the skin of a dead pig makes one unclean. Leviticus 11:7. If they promise to wear gloves, can the Washington Redskins still play football? Can Notre Dame? Can West Point?
Does the whole town really have to be together to stone my brother John for planting different crops side by side?
Can I burn my mother in a small family gathering for wearing garments made from two different threads? Think about those questions, would you?
One last thing: while you may be mistaking this for your monthly meeting of the Ignorant Tight-Ass Club, in this building, when the President stands, nobody sits.
[Dr. Jenna Jacobs stands]

Side note: I do take issue with the “when the President stands, nobody sits” part of this… not all of us can stand…

Can you be a feminist and…? | Choice feminism

Choice feminism states that any choice is feminist purely by virtue of having been made by a woman: that she is in a position to, and has, made a choice is thereby feminist.

This is something I’ve heard a lot of in the last few years within feminist spaces. It is, as far as I can tell, a core part of sex positive feminism and links closely with “corporate feminism”.

Choice feminism turns a collective movement into individual struggles. Every choice is made within a context, a society and a culture which impacts on that decision.

“a woman who quits her job after bearing a child, for example, may be “making her own choice,” but a society where there is no guarantee of parental leave, where workplaces remain hostile to pregnant women and new mothers, and where our conception of the ideal worker is still inherited from a 1950’s male breadwinner model all make that choice considerably easier for her to make.” (Feministing).

Choice feminism focuses on individual choices and thus erases the idea of women as a group of oppressed people. It ignores the patriarchal influences which affect the constraints around that choice. It reduces our power. One woman making a choice does not have the same power as a group of women making a stand.

Choice feminism empowers those who are already in a more privileged position. It is much easier to make choices when you are white, middle class upwards, non disabled, heterosexual and traditionally attractive. You are likely to have a lot more doors open to you and thus more choices.

Choice feminism allows for choices which hinder the feminist movement and hurt other women.  In my view, this isn’t feminism.

Choice feminism reduces the conversation to individual choices to wear heels or lipstick rather than the structural oppression of women the world over.  A lifestyle rather than a political movement.

Choice feminism suggests that if you aren’t an MP or CEO it is because you didn’t choose it, you didn’t work at it, you didn’t try hard enough. It removes the barriers of sexism in the workplace, of childcare issues, of educational inequality that stand in our way.

Choice feminism removes the impact of our actions on other women. If you choose to become a sex worker, you are perpetuating the industry and by holding onto your choice, you can deny other people’s lack of choice. I watched a film about sex work recently and three white, well educated women were discussing how it had been their choice and how they hadn’t received any abuse or coercion. And the implication from their language was that they hadn’t been hurt by the sex industry so abuse didn’t happen.

Choice feminism is about choices made within a patriarchal structure. And how can that compliance with the oppressor possibly further the rights of women? Choice feminism does not challenge the system. It cooperates with it and can be used to further oppress.

Choice feminism opens up the space to ask “Can you be a feminist and…?”, turning the focus inwards, dividing feminists and distracting us from unequal pay and sexual harassment.

Choice feminism closes down important conversations about patriarchy, about sexism, about women’s rights and women’s opportunities.  It stops discussion about glass ceilings and sexual harrasment.  The cry of “anti-choice” is used to shut down people wanting to talk about pornography and the sex industry.

Finn MacKay, more eloquently than I, says in the Guardian:

Choice feminism can be found particularly in media representations of what feminism is and what women’s empowerment might look like. There is an attempt, unfortunately fairly successful, to reduce feminism to simply being the right for women to make choices. Not choices about whether to stand for parliament, or instigate pay transparency in the office or lead an unemployed worker’s union, or form a women-only consciousness-raising group in their town; far from it.

Instead, there are choices about what amount of makeup to wear, whether to go “natural” or try mascara that makes your eyelashes look like false eyelashes, or what diet drink to buy, or whether or not to make the first move with a man.

We all make choices within a context.  I will choose to watch an unfeminist box set within the context of very limited feminist options.  We have to exist in our society and that involves making the least worst choice or compromising on ones ethics and values sometimes.

Choice feminism is much easier to approach that feminism about breaking down structures and patriarchy.  It is alluring and makes life easier to live in an unequal society.  I can very much see the appeal.

However, I do not believe that choice feminism is the way to go.  It individualises the debates, it turns women on each other, it detracts from the major structural inequalities that we face.

And we are not going to get anywhere if we do not unite…

‘… women’s advances in terms of rights and social and political standing have never been the result of isolated actions of individual women making personal choices. And although feminism has frequently been about giving women the right to make any choice they want, it also recognises that choices are not made in a vacuum any more than movements grow in one.

I’m a writer, not an activist, but this book is, nevertheless, a call to arms. I wrote it because I’ve noticed that some lovely, hip, intelligent progressives, people who can recognise racial, religious and class-based oppression without difficulty, are uncomfortable with the idea that women in first-world countries face discrimination. I wrote it because I’m sick of hearing people say that women aren’t oppressed because their husband does lots of housework or because their company pays women the same as men or because they’ve never personally been raped/groped/called a slut/been denied a human right.’ – Emily Maguire, Princesses and Pornstars

For further reading about choice feminism, try:

Boys will be boys 

Trigger warning: sexual abuse

To those people who have shared their own stories and/or listened to mine… Thank you, it has been an important part of my processing my experiences.

“Boys will be boys”. That’s what I was told when I was 13.  I was probably told it before then but this occasion stuck in my mind.  I had summoned up all of my courage to tell my mother that someone was regularly physically threatening me.  He was 15 and physically a lot bigger than me.  He dragged me out of rooms by my ankles. He lifted the sofa I was laying on so that it was vertical and threatened to tip me through the window. He was cruel and mocking.

And when I finally told my mother, she said “Boys will be boys.”

All the messages I was receiving from people around me, from magazines, from books, was that boys are mean to girls because they like them. This, my mother’s dismissal and my exceptionally low self worth was about to set me up for further pain.

When I was 14, this same boy, would sexually assault me.

And I wouldn’t tell anyone got years. Because “Boys will be boys”.


Empowertising is a word coined by Andi Zeisler to refer to the coopting of political and social movements by corporations to sell products.  And is now one of my favourite words.  I have had so many rants about this and it’s great to have a word to describe what I mean.  Although it saddens me that such a word is needed…

Think Dove’s Real Beauty campaign.  Their own website says, “Our body image takes such a battering that feeling beautiful can be hard – in fact, sometimes we just can’t see beauty in ourselves at all. We think our self-esteem is in serious need of a boost.  The problem is, we’re so bombarded by unattainable standards of beauty – in magazines, TV, adverts, on social media – that we undervalue the true beauty in ourselves.”  Which sounds great.  And totally true.

It’s a shame they are the ones selling us unattainable standards of beauty.  On the same page, there are links to:

  • 6 poses you’ll need when you forget your deodorant – perish the thought that you get caught doing something as utterly unnatural as sweating…
  • 6 tactics to get underarms you love – this is something which really bugs me.  Just a few years ago, I don’t think most people even considered what their underarms looked like.  I still remember the first advert I saw which was a dove advert suggesting to viewers that they should be concerned.  This product suggested that you needed to be concerned with how dark your underarms are and use their whitening deodorant to compat this “problem”.  This is how they sell products, they create insecurities which weren’t there to start with and magically provide the solution.
  • Invisible confidence boosters: exposed  – which turns out to be a list of products because you can of course buy anything, including your very own spritz of confidence…  although if it wasn’t for companies such as dove, you might not need your confidence boosting quite so much…

We also have to remember that Dove is owned by Unilever who also sell products such as skin whitening creams in India.  They created a Facebook app to let users whiten their skin in photographs. Unilever also own Lynx which are reknowned for their stereotyping of women and turning them into sex objects.  As a major international corporation, Unilever sell many many products under many many brands, these are just a couple of examples of their hypocrisy.

Whatever they say, they do not care about supporting people to love the body they have.  They do instead care very much about making that body something which needs fixing.  This is consumerism in all it’s nasty glory.  This is not a body positive, feminist, women loving campaign.  This is coopting a movement to sell products.  This is empowertising.

And empowertising has been going on for a long time.  Zeisler provides a brief skip through the history in her article.

“The history of drawing on feminist language and theory to sell products has been driven by the idea that female consumers are empowered by their personal consumer choices—indeed, that choice, rather than being a means to an end, is the end itself.

The idea that it matters less what you choose than that you have the right to choose is the crux of “choice feminism,” whose rise coincided with the rapid, near-overwhelming expansion of consumer choice that began in the 1980s.” B*tch

And choice feminism is something I shall come back to at a later date…

This has turned into a bit of a rant about dove and unilever but they are very very much not the only company to do this, they just happen to be a very large company and the dove “campaign” got particularly under my skin…