disability

What does body identity mean today?

When I was at university I wrote this feature article about Body Integrity Identity Disorder (BIID), described by me as “a medical condition whereby sufferers believe that their anatomical identity is not representative of the way they think they should look”. Although Wikipedia will give you this more direct definition.

born2bdifferent_biid_feature_nickyashwell

I  came to this conclusion: elective amputation is not socially or medically accepted because disabled and non-disabled people are not considered equal.

Consider these two points:

  1. BIID is comparable to Gender Identity Disorder (GID). In both cases a person may want a different body that they consider more representative of who they are. Gender identity, fluidity and neutrality are becoming increasingly mainstream
  2. As a society we have no problem letting doctors tamper with our bodies if it means bigger breasts or a smoother face. We’ve also at times normalised drinking, smoking, obesity and lethargy – all of which are proven to be bad for your health

So why is changing your body or risking your health with an amputation such a shocker?

This is just one of the questions I’ll be exploring when I talk at How The Light Gets In Festival. Find me on stage at the Ring at 2pm on Thursday 2nd June.

 

*A note on this post: I’m not arguing for or against elective amputation. I’m a neutral observer who finds this a fascinating topic worthy of exploration.

Advertisements

Why I run #2: To promote awareness of (dis)ability

It’s three days until the London Marathon, and I’ve spent the last week learning about Leonard Cheshire Disability so that I truly understand why they are a great charity to support.

As a person who was born with what could be considered an apparent disability, but one I have never felt constrained by or even conscious of really, I’ve found that my ability is at times underestimated or misunderstood. Here’s an example: when I’m on an underground train, someone will often offer me their seat. I’m fairly sure I don’t look pregnant. Or even uncomfortable in my shoes. What I do look is different because of my Bebionic hand (or stump if I’m not wearing it). And therefore strangers make the thoughtful, but misplaced assumption, that my need for a seat is greater than their own. This suggests two things to me:

  1. They are uncomfortable, and don’t know how to react
  2. They don’t understand my ability

I understand my own ability, but I don’t know anything about what people with other types of (dis)ability need, don’t need, or care about. So to find out, I went to the #londonforall mayoral hustings event organised by Leonard Cheshire Disability, Scope, the RNIB, and Mencap. Through listening to Sadiq Khan, Zac Goldsmith, Caroline Pidgeon, and Caroline Russell (standing in for Siân Berry) come under fire with questions from London’s disabled population, I gained some understanding of the key issues to this group of voters.

2016-London-Hustings-High-Res-892

Transport. As Leonard Cheshire Disability have previously pointed-out, every day is like a tube strike for wheelchair users. It’s not just inconvenient, the tube is often an impossibility, meaning wheelchair users will instead pay an expensive cab journey instead of a £2.80 Oyster fare. And sometimes minicab drivers refuse their service.

tfl_accessible_percentages

Housing. We’re all familiar with the shortage of affordable housing in London, but there’s even less of it around that’s adapted for specific needs.

Disability hate crime. Some questions expressed concern about going out at night alone – a fear justified by statistics that show disability hate crime is on the rise, and disabled people are at greater risk of violent crime than they were ten years ago.

I don’t think the mayoral candidates understand the varied needs of disabled Londoners, just like strangers don’t understand if I need a seat on the train, but the intention is equally good. Improvements will only come by increased awareness and inclusiveness. All candidates talked of bringing in representatives to consult on how new policies will affect and can be adapted to suit those with disabilities and hidden disabilities.

The marathon shows London at its best, with bustling streets, non-stop support and a community spirit. It’s a great time to remember #Londonforall, and so I’m running to raise awareness, and to promote understanding and inclusiveness.

Image by Julian Newman Turner

Image by Julian Newman Turner

See the Twitter feed from #Londonforall

Learn more about Leonard Cheshire Disability

Disability Now: Cybernetics Special

Can and should cybernetics obviate the effects of disability?

weareoxymoron_robot

Another week, another discussion on transhumanism, this time courtesy of Disability Now and their podcast team of Paul Carter, Mik Scarlet and Sophie Partridge. These are outspoken people with a strong sense of identity anchored in part, around their disabilities. For these folks, cybernetics poses both opportunity and threat – it’s impact something not yet tangible but up for debate from both sides. As wearer of a bionic hand, I was the most pro-cybernetics party at the table and spoke my piece on the unexpected improvements it has made to my life.

Here’s my top 5 takeaways from our discussion:

1. Cybernetics and bionics are different things

Kind of. According to Mik, “the dictionary says that bionics is replacing bits that you’ve lost; like any use of physical ability or a loss of a limb etc. with technology. And cybernetics is augmenting ability.”

2. Enthusiastic engineers at the forefront of cybernetics hear a one-sided view of disability

There’s a resounding assumption that everyone with a disability wants to be “fixed” and that’s really not the case. What does the future look like for a disabled person in a world where it’s increasingly uncommon to be so?

3. But we’re all already benefiting in some way from technology that we consider part of us

Sophie conceded that her power-assisted chair is a piece of technology that she wouldn’t want to be without and considers an extension of her body. Most people I know feel this way about their mobile phone.

4. At some point, cybernetic-assisted ability will be greater than that of an unaltered human

Mik referenced his recent feature for Disability Now in which he asks, in a world where the disabled are given super-human enhancements, “Who’s disabled now?“. A topic likely to be discussed further as long jumper Markus Rehm continues his fight to participate in the Rio Olympics.

5. Cybernetics might be a whimsical diversion superseded by genetic enhancement

If developments in genetics mean a baby with one hand could have a new one grown, or that no babies are born with physical disabilities at all, prosthetics like my bionic hand come become as much a relic of technology as minidisc player.

Download the podcast to hear more on these topics and for further insight read Mik’s three-part series for Disability Now.