------------ ---------- Diary of a Goldfish: Blogging Against Disablism Day: The political and the deeply personal

Diary of a Goldfish

Sunday, May 01, 2011

Blogging Against Disablism Day: The political and the deeply personal

One Blogging Against Disablism Day, I was struggling to update the archive page. When overwhelmed, cognitive dysfunction can deny me access to very basic bits of information – I have forgotten my own name before, let alone my address or telephone number. At this point, I was having trouble listing the contributions in alphabetical order – something lots of people might struggle with when tired. In particular, I couldn't for the life of me work out whether M came before N or vice versa. So I asked my then husband which came first.

A brief exchanged followed. It was impossible that I couldn't remember which came first - I wasn't that stupid. I said that honestly, I couldn't remember, and reached for the dictionary, which I should have done first. Asking might have been quicker, but I had obviously picked a bad moment. My husband got up and punched the back of my laptop screen, cracking the case. For a moment I thought the screen was going to die and I would lose my computer in the middle of BADD. That's why I know what the date was.

The damage was kind of unlikely – I guess he meant to punch the laptop shut, but instead it cracked. My ex-husband did not value my things very highly, except when he wanted to criticise. He referred to my things as shit. As in, “There's some of your shit on the kitchen table.” or “Make sure you tidy your shit away before someone comes round.” After I left, I found I was in the habit of referring to my things as my shit, even though I had always objected to it.

The political is sometimes deeply personal.

Disabled people don't get abused because we inspire abusive behaviour in others. It's not even a matter of physical vulnerability and social isolation – although these can play a role. Marginalised people of all variety get abused because we are marginalised, and with marginalisation comes vulnerability, even attractiveness to those people who feel more comfortable with power and control rather than love and respect.

In the last year, I have been asking myself a lot of questions about how and why I remained in a relationship where I was shouted at, mocked, undermined and physically assaulted on a regular basis. There are a lot of answers that I'm still sorting through, about my vulnerability, about the mechanisms of abuse and also about my capacity to see the good in people, my capacity for love, loyalty, hope and so on. But disablity is a big part of what made me vulnerable.

Statistically, being disabled made me three times more likely to be abused than other women – which means that pretty much half of us will experience violence at some time. Disabled men are twice as likely to be abused as non-disabled men and are likely to have even more trouble identifying their abuse and getting appropriate help. I feel it is a near-certainty that somebody reading this is in an abusive relationship right now, which is a big part of why I am writing this.

Initially, it was very difficult to see my personal experience as anything other than the effect of a particular dynamic between my ex and I. After all, I was well aware of the relationship between disability and abuse (physical, verbal, sexual and financial) and thought it had nothing to do with me. My ex was not a monster – I was never more than bruised - and I was an outspoken feminist disability-activist type who wouldn't put up with anything too awful. But now I see that my cultural experience of disability left me particularly vulnerable to accepting all kinds of perverse normalities in my every day life.

For example, I honestly thought it was normal that what I could and couldn't do should be constantly questioned and cast into doubt. It seemed normal that I should have to defend myself against the ever-present suspicion that I must be either milking it, exaggerating my pain and fatigue or not simply pushing as hard as I might. There was a regular, baffling accusation that I acted more sick when I was at home with my ex than on days when I was out with family and friends. Of course, I only ever went out on good days and then with all that extra stimulation, the adrenalin kicked in to make them very good days before I returned home to crash for a week or so. My family and friends never saw me on mediocre days, let alone bad days.

As disabled people in education or at work, claiming benefits or special equipment, attempting to access goods and services, even in healthcare, we are treated as if any accommodation is a privilege, as if none of our experiences are legitimate until we have convinced other people. Our culture struggles with the inconsistency of chronic illness, the idea that variable limitations are real limitations and it allows this to be other people's business. We should be far more outraged by the social sport of judging other people who don't seem very ill, who have a disabled parking badge but who have been seen walking, people who's illnesses have dragged on so long that maybe they aren't trying hard enough.

Speculating about the honesty with which another person reports their health is as intrusive as speculation about the honesty with which someone expresses their feelings for loved ones. I don't even believe that this doubt was genuine – it was even less consistent than the ups and downs in my health – but this was a weapon our culture made available.

It honestly seemed normal that providing someone with help that they needed because of an impairment should be considered special, burdensome and deserving of infinite gratitude. Making a meal for yourself and your partner because someone has to do it is no work at all, but making a meal for yourself and your partner because she can't physically do it is an encumbrance – especially when a disabled woman depends on her male partner. Other men, I was told, wouldn't put up with it. I was lectured on how difficult it was to transport and push my wheelchair, how difficult it was to include me in any trip out. I was repeatedly warned not to make myself a problem for other people, as if anyone who did me any kind of favour was performing a great act of self-sacrifice. Sometimes I received these warnings in front of other people, creating the impression that I was ungrateful and demanding and making it impossible to protest without sounding even worse.

In reality, I may have provided more practical help to my ex than he did for me (we ate very badly and my washing-up and laundry was well below his standards) but because of the few things I absolutely couldn't do without help, I was constantly reminded of my burdensome nature, my incompetence and my dependence on him. And every piece of help I received was first held to ransom. If I was going out somewhere, if someone was coming round, often even when he was cooking dinner, I would be warned to tread carefully or the trip, the visit, even the meal would be withdrawn.

We give “care” special status in our culture, when very few of these tasks are special. I have needed very little intimate care, but I need help with food preparation and housework and I need help getting out and about. When I live with other people, I believe I can make a contribution to a household roughly equal to the help I need, and this is the sort of thing that family members and friends do for one another all the time anyway. The only special thing about the help I need is that I couldn't manage by myself and if I lived alone I would have to pay for help. But then some non-disabled people who live alone and work very long hours pay for help because they don't have time for the kinds of tasks which I don't have the energy for.

I honestly thought it was normal that my competence should be repeatedly called into question. My cognitive dysfunction and poor co-ordination was met with anger, sometimes mockery. If I struggled for words, I was incoherent, inarticulate and it was a joke that I should consider myself a writer. If I was slow to answer, I was living in a “cloud cuckoo land”. If I fainted or collapsed, if I split things or dropped things, then I was stupid and careless. When I argued that it was a symptom of illness, I was told that I obviously wasn't safe doing anything on my own and thus threatened with a further loss of independence.

Disabled people, especially those with mental ill health, cognitive dysfunction and intellectual impairments, are regularly treated as if we are not capable. Having an impairment in one area – or even having experienced a temporary lapse – is seen to signify pathological incompetence. This leads people to be afraid of admitting diagnoses and asking for help. It is also a self-fulfilling prophecy; there is nothing so sure to damage a person's ability to perform any given task than repeatedly telling them they are rubbish at it. Since I left, my ability to manage my poor co-ordination has improved a great deal because I'm no longer in constant danger of being shouted at if I slip up.

People with long-term conditions usually acquire a high level of self-awareness, which often includes an awareness of circumstances in which we lack self-awareness. I have a very good idea about what I can and can't trust myself to do, and although I still undoubtedly make mistakes, everyone does. I think I behave far more sensibly than many non-disabled people do when they experience excessive tiredness – let alone when they are drunk.

It honestly seemed normal that my physical appearance and weight should be a cause of constant criticism and mockery. My body was sometimes disappointing, sometimes disgusting but most often simply hilarious. Every day I would hear jokes about how fat I was, accompanied by sincere concerned remarks that my physical difficulties were not down to my ill health but to my weight. This is about how heavy I was at my absolute heaviest. Most criticisms were about things which I had especially little control over because of my condition such as my weight, my unhealthy-looking pallor, the general lack of firmness and muscle definition in a body with serious problems exercising.

Disabled people receive the same nonsense messages about physical appearance, sexual attraction and personal value as the rest of us, except that we are frequently excluded by default; images of disabled people are extraordinarily rare in our culture (except the obligatory wheelchair-user on politically-correct information leaflets). There are even fewer circumstances where people with physical impairments are portrayed as sexually attractive. In fiction – especially English detective fiction, incidentally, I don't know why – disabled wives are a standard explanation for a frustrated and adulterous husband. In a culture where romantic love is sometimes spoken about as a transaction between people of varying looks, status, brains etc., disability is considered a major disadvantage.

In real life, disabled people are often attractive, some of us are beautiful and it is especially perverse that anyone should be criticised on their looks by their own lover. I also think I made a mistake in feeling it shouldn't matter, that to believe in equality meant thinking that it didn't matter if I was made to feel ugly. It did. None of us should ever feel ashamed to be seen.

The society in which I live does not condone what happened to me. However, disability contributed to my vulnerability because of how society treats disabled people. The experience of disability rocked my self-worth to the extent that it took a long time to see that I did not deserve to be shouted at, laughed at or assaulted at all, let alone in my own home.

The good news is that I got away and now I have recovered enough to be able to open up about some of this. The bad news is that many disabled women and men remain vulnerable to these kinds of relationships. Not just with partners, but with anybody in any position of power over us. Disabled people in the UK are increasingly vulnerable to abuse as their financial independence and the independence brought by care provision slips away. Meanwhile toned-down versions of the messages that abusers use about our integrity, our burdensome nature, our competence and our unattractiveness remain all over our mainstream media.

This post has taken a tremendous amount of courage to publish. I have combed through the archives to make sure that my ex is utterly anonymous, but my anonymity here is paper thin. I considered posting elsewhere or pretending this was a guest post, but I think it is important to say this here, as myself, because I have the strength to do so.

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Comments on "Blogging Against Disablism Day: The political and the deeply personal"


Anonymous kethry said ... (2:25 AM) : 

thank you. Yes, it must have taken a great deal of courage to post this, and for that, you have my admiration. I hope you keep walking steps along this healthy path. Its not easy to do, this I know from experience, but its the right path to be on. *hugs*


Blogger Wheelchair Dancer said ... (2:27 AM) : 

thank you. thank you. thank you.

I have no other words.



Blogger Jess said ... (3:00 AM) : 

Proud of you, and proud to be your friend. You are a rock. On hell of a rock, lady.


Anonymous Jennifer Cole said ... (3:39 AM) : 

Very well done! Thank you for being so honest.


Blogger Selene said ... (6:02 AM) : 

What a deeply moving, amazing and honest post. Thank you so much for sharing it with us all. Just wow.


Blogger Len said ... (6:24 AM) : 

Thank you for your courage and frankness. Without people willing to risk stating their truth, nothing changes.


OpenID aftergadget said ... (7:23 AM) : 

That was a wonderful post. I felt so sad and angry reading it, that that had happened to you, and also, it's so very familiar. You are so right about the cultural messages that make it that much easier for your ex to have abused you in those ways. I know so many of us have been in abusive relationships with partners or caregivers. I am sure you have helped someone else feel less alone with your brave post. Rock on, keep telling the truth. And thank you so much for doing BADD!


Blogger Charlesdawson said ... (10:33 AM) : 

A deeply moving post. I hope, as I did when posting myself on this topic some years ago, that it will be read by some victims who will realize that they are not alone, that what is being done to them is abuse; and they will be encouraged thereby take the first steps to freedom.

You must also realize, to be fully healed, that the abuse you suffered was, in a literal sense, nothing to do with you. The need to abuse is projected out of the personality of the abuser, on to the nearest available victim. You just happened to be there, in the line of fire. Pity your ex, it must be hell being him, but never ever believe that he has changed.


Blogger DavidG said ... (12:42 PM) : 

Great post, courageous post!

"The society in which I live does not condone what happened to me." Sadly I'm not so certain on that. When they see us as a burden, when they see us as helpless, when they see us as scroungers, fakes and exaggerators, then they aren't just condoning our abuse, they're partaking in it.


OpenID slewth said ... (1:00 PM) : 

As others have already said, a very courageous post. Thank you.


Blogger Sally said ... (1:09 PM) : 

Dearest Goldfish
Thank you for digging up the deepest.
Thank you for BADD.
With love.


OpenID starrlife said ... (2:20 PM) : 

Ah, so brave and well said. I applaud you and am so proud that you were able to extricate yourself. I also agree with charles dawson. Predators seek vulnerable people- the only thing about you is that you were a vulnerable person. Love and respect...


Blogger Ruth Madison said ... (2:25 PM) : 

Oh my goodness! This is a wonderful post, something that needs to be said. Thank you for having that courage.

I'm so glad that you found your strength and got rid of that relationship!


Blogger Complicity Theory said ... (3:00 PM) : 

Brilliantly put. More people following your lead will improve their lives and the lives of others.


Blogger spacedlaw said ... (3:58 PM) : 

An extremely courageous blog post.
You are admirable. Don't let any fool make you believe that you are not.


Blogger Hannah Ensor said ... (4:50 PM) : 

Thank you.


Anonymous Rachel said ... (5:46 PM) : 

That was a difficult read. You are so strong and brave. Thank you for sharing such a personal and emotional part of your life x


Blogger Sponge said ... (6:05 PM) : 

Your post was very moving and inspirational. It must have been really hard to do, but so worthwhile, as it speaks a thousand volumes.


Anonymous Sharon said ... (6:50 PM) : 

Thanks for writing this. I understand certain aspects of what you went through though without the added disability prejudice. My (mostly verbally and emotionally) ex did however constantly attacked my attitude to our disabled son- using terms about him he knew upset me.
So glad you found the strength to move on and to write about it here. That's bloody courageous and I'm just staggered at how amazing a woman you clearly are.


Blogger Becca_Boot said ... (7:10 PM) : 

Hi, I’m not able to take part in BADD by writing a blog this year but I’m planning on posting a list of the blogs on my tumblr and I was wondering if I could include yours.
Please let me know if this is okay.


Anonymous Stephanie said ... (12:42 AM) : 

Thank you for this post.

One of the cultural misconceptions in the US (and I think its one crosses oceans/nations) is that only "weak" people (referring to emotional-, psychological-, or personality-based weakness, not simply physical weakness) are abused, and somehow this translates to the abuse being the victims' fault. (I still don't understand the logic or psychology of that one, but I know it's there and that I have to fight prejudice even within myself.)

But I've seen incredibly strong people exist in abusive situations for a variety of reasons (usually, having to do with some sort of belief that they deserve it).

...And, I had a point, but I think I lost it. Something to the effect that I hope people read this post and make the connection that abuse is abuse, and that it's not the victim's fault.

Perhaps when the point comes back to me I'll try again. *sigh*


Blogger Kay Olson said ... (5:35 AM) : 

Excellent. Thank you.


Blogger Book Girl said ... (10:41 AM) : 

This is so familiar, and you wrote about so well and with such courage.

Thank you for this.


Anonymous Crimson Crip said ... (1:22 PM) : 

I am crying as I write this. not out of sympathy for you, or even as I would a few months ago. I'm crying because for those of us who escape, and I know it takes a long time, many don't, many don't know how, or even realise they don't have to put up with it, that they have rights. I am still fairly new to being a survivor, on bad days I'm still a victim, but those days are becoming less now. I have no answer, I can only offer empathy and solidarity, and thank you for speaking out. Your courage helped me. BTW I debated whether I should identify myself, but I realise that by doing so I may help someone else.


Blogger Marysia said ... (4:00 PM) : 

Thank you for Blogging Against Disabilism & for sharing your own pain from discrimination at its most intimate. So many women with disabilities have had parallel experiences.


Blogger imfunnytoo said ... (7:33 PM) : 


You got out. It matters less that you stayed with it, than that you got out...

And you've got guts to put this out there, not because it should remain secret, hell no. But because of vulnerability...
Thank you...


Blogger Dad said ... (9:42 PM) : 

Sorry to be a bit late and Not sure if I will complete it but I's like to post on the Unexpected Positive sides of being discriminated against in regard to injury and so called disability. Keep in mind I have been diagnosed as significantly cognitively impaired so my views may be warped according to some peoples understandings. http://grandadspaintingprogress.blogspot.com/


Blogger staśa said ... (12:59 AM) : 

As someone who is a domestic violence survivor -- and who struggles with chronic illness -- I honor you for your courage and your honesty.

Thank you.

Blessed be.


Blogger Paula Apodaca said ... (4:29 AM) : 

What can one say? I am glad for your presence here and BADD has meant much to me. I think I understand the vulnerability of which you write. This is the thing, the unspoken message we are brought up with, that is communicated to us, that we can trod on the vulnerable with no attendant consequences.
Much love and admiration,
Paula Apodaca
PS... Don't worry about being anonymous, no one knows you here.


Anonymous Anonymous said ... (12:55 AM) : 

As a long-term singleton, I know that it must take a great deal of courage to write a post like this, but I have literally no experience that lets me understand exactly how much.

I do hope for romance one day, though, and I'm grateful to you for writing this, because it gives me an idea of the warning signs I might need to look for in safeguarding myself.

Thank you.


Anonymous Andrea S. said ... (1:00 AM) : 

Thank you for your courage in writing this. I only wish that you didn't need to--both because I wish it hadn't happened to you and because I wish there weren't still people out there who might be experiencing something similar who might need to hear it.


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