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Zara Todd: I Will Not Settle

young white woman wheelchair user holding a microphone. She has long brown hair and the flooring is brilliant red while the other people are in a blur.

Zara Todd speaking at an event

Activist, educator, campaigner, feminist and disabled woman, all these terms are used to describe me  and I have been known use them to describe myself. Of course they are only a snapshot of the many identities and labels I have and they will continue to evolve over time. However of my identities, two identities tend to dominate people’s perception of what I should expect in life: disabled and woman.

 

I am, with all my being political (although I am decidedly non-partisan when it comes party politics) and I pride myself on being present and active in my world. Yet every day I get a  question or comment normally edged with surprise or admiration at the life I lead. Society doesn’t know what to do with me because I don’t conform to the boxes that have been created by society to understand the experience for disabled people. People expect my life to be less interesting than my non disabled peers and are shocked when it is as or more interesting than others my age. I enjoy my life and try and live it to the full but I experience many barriers in doing so and face exclusion frequently.

 

Despite the challenge my life and my achievements present to people’s perceptions, there is still a prevailing undercurrent in many of my interactions that I should settle for less or tolerate discrimination and inequality because I’m disabled.

 

I remember when I graduated from university a neighbour asked when was I getting a job at the local supermarket (I presume because that was the only place they’d seen disabled people employed). I don’t know whether I should just be grateful that they thought I could work or outraged that their expectations of me were so limited. There is nothing wrong with not working or working in a supermarket but there is something wrong with making assumptions about someone’s life choices without having a conversation with them.

 

I feel that as a disabled woman the expectation to settle is magnified because I am expected to settle as a woman as well as a disabled person. Traditionally society has framed  both women and disabled people as passive, this means that disabled women are often seen as the epitome of passive. Although we are rapidly challenging this on both grounds, I often get the feeling that I’m expected to be a bystander in life and not an actor and the barriers I experience accessing society are born out of this. For example I speak at conferences quite often and it is not unusual for me to have to speak from the conference floor or be lifted on to the stage. Although people normally apologise profusely, it leaves me feeling like I don’t belong there or that I should remember my place.

 

Frequently there is expectation that I should be grateful to settle and it’s not unknown for people get angry or put out when disabled people ask for more wheelchair spaces on buses are a great example. It’s almost like you can be here as long as it doesn’t affect me.

 

This leads me to wonder if this expected gratitude is driven by the unconscious belief that I and other disabled people have been allowed/tolerated in the mainstream party and we should fit in or shut up and accept whatever access we’ve been given. However it often leaves me feeling frustrated like I’m at a concert where I’ve discover most of the audience have access all areas passes and I’ve only been allowed through the door.

 

I attend a lot of events and conferences and often people go to great lengths to explain to me the access adjustments, whether they relate to my needs or not. While I am grateful for the thought I often feel conference organisers expect me to praise for doing the minimum. I celebrate and praise the conferences and events that embed access features without fanfare and share the information on available adjustments with everyone rather than treating accessible features as a secret that you have to look the part to access.  Sometimes when accessing mainstream events I feel like some kind of pioneering explorer entering the unknown and I feel like I have to over appreciate when attempts at access are made out of fear that the organisers won’t even attempt to include disabled people in future if I don’t.

 

Even within spaces exploring oppression or rights on grounds other than disability I often feel I’m expected settle for partial participation because I can access most of something or the bits organisers see as important. This often leaves me compromising my safety and/or dignity to access social aspects of events because they tend to be the bits seen as add ons and optional extras. Unfortunately I see the social aspects of life as valuable as the professional because they are often the spaces I can show I’m human and make connections with people beyond professional curiosity.

 

For a long time I would make compromises without articulating what I was sacrificing to be included because I didn’t want to be seen as ‘that’ person the party pooper, the moaning disabled person or the difficult one. However I realised recently that by hiding what being in inaccessible spaces costs me I was doing a disservice to other disabled people and future me who may not be able to make the compromises I currently can.

 

The pesky thing about exclusion is it is rarely visible, although this is not unique to disability.   If someone is not there how do you know whether they are not there by choice or because they are experiencing barriers getting in the space. The exclusion of many oppressed groups is difficult to challenge because if someone is excluded how do they access you or vice versa to work through and remove the barriers.

 

I get the feeling that those with hidden impairments and access needs like child care have to compromise even more often than  other groups because having visible needs initiates the conversation for you whereas those whose needs are less visible have the additional burden of deciding whether disclosure is worth it. When I am running events I try and create spaces where everyone is allowed to have and articulate needs. I do this by asking everyone what do you need to feel included and able to participate.

 

I currently have the privilege to chose how and when I compromise my safety, wellbeing and dignity to take part. What this means is in my work life particularly when accessing non disability spaces I now strangely settle more. Why? because even in the most conscious of spaces we are yet to get to the point where disabled people’s absence from spaces is consistently worthy of comment. If I’m in the room then I can raise it. People can see and feel the effort and energy I spend just getting into the room and maybe next time the next person won’t have to compromise so much.

 

In my private and social life I chose to comprise  my needs when the benefits of being present outweighs the compromises I need to make to be there. As I’ve got older and have been able to see the consequences of settling, my willingness to settle and compromise my needs has decreased. while this unwillingness to compromise my needs has lost me friends and caused me to miss things I generally have a better time now than I had when I settled for partial participation. What’s interesting though is people generally seem to expect me to settle more in my personal life  than elsewhere and I can’t work out if it’s because I’m disabled a woman or both. Although I suspect the expectation to compromise comes from the fact that in personal spaces decisions and actions are more traceable to individuals.

 

Although I compromise less in personal spaces I hide the personal impact of barriers more because I know that many of the barriers I experience are out of anyone’s control. My exception to this is attitudinal barriers because I can’t hide them and they cost me a lot. For example it is often assumed that the people that I hangout with are not my friends through choice but out of charity, kindness or cash. I would like to hope that my friends are there because they enjoy my company if not being me hopefully I’ve scared off anyone there for any other reason!  However it has taken a long time to come to terms with the fact people might actually want to be my friend even with all of additional considerations that come with that.

 

For relationships once people get over the shock as a disabled woman I might want one. Most strangers assume I should/can only date a disabled person or worse I should jump at any non disabled person who shows me the slightest bit of interest regardless of how unsuitable they might be. Navigating this minefield is still something I’m not very good at.

 

Everything I do in life I do because we only have one life and I do not want regret not living the life I want because of others expectations. Yes there are still barriers and I have to settle like everyone does but I refuse to settle just because it is expected of me as a disabled woman. I hope that by being open about the decisions I make to have control over my life that I can support others to live their lives as they wish.

 

Weirdly I think settling is fine if you can live with what you get as a result but no one should feel obliged to.

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Zara, a white woman, is smiling at the camera. she has black rimmed glasses on Zara Todd is a Sisters of Frida’s director.

Twitter @toddles23

2 responses to “Zara Todd: I Will Not Settle”

  1. Christine Umapathysivam says:

    Great article. Appreciate hearing your perspectives. Share many of your positions. I too am just not really prepared to settle for a life that is defined about what others think is “right”. We do only have one life and it is not a dress rehearsal so I intend to live it to its fullest what ever that means.

    Finally the future of people with disabilities in public life rest with normalising the fact that they will be everywhere doing everything that they want to.
    the more that people with disabilities are prepared to do , the more that other people will understand that disability in its various forms is just part of life!

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