The You’re Just Little photographic exhibition reveals the challenges, obstacles and societal assumptions that Dwarf people face on a daily basis.

Episode Two talks about independence and the difficulties and obstacles, financially,  as well as physical, that dwarf people face in order to move around society safely.

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To talk about the exhibition and the content of this podcast, you can email me at steph@hellolittlelady.com, comment below or join in the conversation on Facebook, Twitter and Instagram, using the hashtag #yourejustlittle.

Transcript

Hello, I’m Steph, the curator, creative activist, and artist behind this work.

You’re Just Little was a photographic exhibition that was first shown in October 2018. The aim of the exhibition was to reveal the challenges, obstacles and societal assumptions that people, like myself, with Dwarfism, face on a daily basis.

In the previous episode, we looked at the theme of accessibility and the difficulties Dwarf people face accessing public facilities.

In this episode, we are going to take a look at the theme of Independence and the challenges people, like myself, face, to be able to move around freely within society.

The photo in this episode encapsulates these challenges. In this photograph, I’m sat behind the steering wheel of my husband’s car. You can see that I am looking directly at the steering wheel. The dashboard is blocking my view and I cannot see over the bonnet. The speedometer is mostly blocked by the middle of the steering wheel where the airbag is located. Slightly higher up, to the left and right you can see red-brick terraced housing. A bright blue sky, dotted with white clouds can be seen when looking up and above the steering wheel. You can see the feet well and driving pedals through the bottom of the steering wheel. You cannot see the road or traffic. The space feels claustrophobic.

As with most aspects of life, this photograph is multi-layered. The situation, shows, yes, there is an accessibility issue in terms of the car being too big for my body. The main ‘’layer’ or theme it represents is the challenges faced for independence as a Dwarf and the obstacles I have to overcome to be independent in the first place.

To put this into perspective, your average-height, non-disabled person, finance, budget and licence requirements permitting, can visit a car showroom, pick a car, sort out the money side of things and arrange a date and time to pick it up and drive off, quite happily about their new shiny purchase. People like me, have all that, and more to contend with. As you’ve guessed, it’s not a simple process for a Dwarf person.

Firstly, there are the physical difficulties – the not being able to see over the steering wheel or being able to reach the foot pedals or the gear stick.

This can be remedied with car adaptations, yes, but this throws up another obstacle too, can you guess? Yes, financially. Adaptations are costly, yet an essential means to enable people like me to drive safely. Adaptations can cost anywhere from £1000 to upwards of £4000 and more, depending on the level of adaptation required. Quite a sizeable chunk of money to add to an already expensive exercise.

Surely there must be grants available for you to apply for, you may ask.

Yes, there is.

Yet in the world of austerity, people like me are increasingly finding our means to qualify for funding taken away, due to changes in government policy and the introduction of personal independence payments, or PIP as it is known. Qualifying for the enhanced rate of the mobility element of PIP gives you access to Motability and with it the grants fund. Unfortunately, the PIP mobility element only focuses on how far one can walk rather than the adaptations required to be independent.

To put this into context, an average-height person, with say COPD, can qualify for the enhanced rate of mobility on PIP because they have difficulty walking 20m or less. That person will then automatically qualify for the Motability scheme, with little, if any adaptations required to the car. People like me, who don’t fall into the enhanced bracket, but need adaptations, and with it, financial assistance, to be able to get into a car to drive it in the first place, are being denied access to these services through government policy. I want to make clear, that neither disability is less worthy of assistance, but public policy refuses to recognise or acknowledge that society is and can be as disabling as one’s health.

Such policies, while designed to enable and foster independence, end up creating systemic barriers to independence for people with Dwarfism. Many forms of dwarfism experience musclo-skeletal issues which makes walking distances difficult. We use double the amount of the energy to walk the same distance as a non-disabled person. I literally do double, if not more, steps to walk the same distance as an average-height person, and as you can imagine, it’s exhausting trying to keep up.

These obstacles – physical, financial and at public policy level, means that Dwarf people have to overcome more obstacles to get to the starting line that a non-disabled person begins their journey of independence at.

These extra challenges, this extra layer, mean that we cannot access society in an easy way, or certainly have to fight much harder for equity in order to be equal. It’s an additional obstacle to finding and keeping employment. To be able to go to work and earn a living. To accessing education, hospital appointments, seeing friends and being able to be part of society.

And this brings me to the final layer of this photograph. For Dwarf people like me, the most important aspect of gaining independence is being able to move around safely.

Public transport can and does also present difficulties – physically and in terms of personal safety. We can easily get crushed, bashed into and overlooked in crowds. We cannot hold onto tall railings on trains and buses. Or at times, climb onto seating that is too high. While sitting, we may not be able to hold onto the rail in front of us to keep sat safely.

Then there is the issue of dealing with the negative attention and curiosity that our bodies generate. The stares, the comments, being photographed or videoed for amusement.

A car, and the necessary adaptations, provide a Dwarf person with the means to move around safely. It goes some way to reduce our anxiety about going out of the house. It’s a means to engage in life . A car is safe space to rest when fatigued. Yet the validity of our needs are constantly challenged when seeking or asking for support.

We are told – ‘But You’re Just Little’.

Thanks for taking a look at this particular photograph. Don’t forget you can see the actual photo over at hellolittlelady.com. If you have any questions please do email me at steph@hellolittlelady.com, or join in the conversation, through social media using the hashtag #yourejustlittle. And don’t forget to take a look at our other photos too.