Disability rights are human rights

A few years ago, I realised I was a feminist. It was a bit of a shock, as for years I had scoffed at the idea that feminism was needed. I’d been brought up on a healthy dose of 80’s advertisements that told me girls could do anything boys could do. Thankfully, I had a good advisor who asked me lots of questions and prompted me to have some realisations, because while women can do anything, their work might not be noticed or opportunities might not be as readily available for them. In response to this reality, we all need to work together to make the world more inclusive.

Later, I started learning about the idea of ‘intersectionality’. That your identity is made up of multiple pieces, and that some parts of your identity can marginalise you in society, such as ethnicity, education, background, age.

That’s probably about the time I met Robbie Francis from the Lucy Foundation. The Lucy Foundation has run multiple PledgeMe campaigns for their coffee company with impact (such as this crowdfunding campaign in 2017). They provide employment opportunities for disabled people in Mexico to grow coffee and export to New Zealand because while it’s hard to be disabled in countries like New Zealand and Australia, it is even harder in countries lacking some of the social safety nets we have here.

Robbie herself has the lived experience of moving through the world with a prosthetic leg called Lucy. She has a huge heart, and a huge brain, having completed a PhD on the experiences of people with disabilities in conflict zones. She also gives such kind feedback, and has educated me on concepts like universal design.

Universal design is the idea that every space should be able to be entered by everyone, without the need for adaptation. Universal design leads to universal betterment, a greater and rights affirming experience for everyone. For example, adding ramps to buildings makes it better not just for people in wheelchairs, but for the elderly, parents with prams, and even roadies pushing sound equipment into the building. This image really explained the difference for me:

Source: PledgeMe

Earlier this year I messaged Robbie and some other friends, including Red Nicholson from Curative and Grace Stratton from All is for All, to ask if I could pay them for some advice around how PledgeMe could be better at disability inclusion. They didn’t really want to be paid (instead they asked us to buy more Lucy Foundation coffee), but they offered to jump on a call to talk about disability inclusion.

Why is disability inclusion important?

Red explained it best. As a society we have people with a whole spectrum of functional ability — from Olympic athletes to people with significant impairments. Most of us dip in and out of impairment through our lives — as we age, when we get sick, when we have children. How much these experiences “disable” us depends entirely on how well we design our built environment, and the attitudes of those who inhabit it.

This was shown recently when Golriz Ghahraman shared a discussion with her doctor about her Multiple Sclerosis diagnosis. The doctor said “No one ends up in a wheelchair,” meaning to reassure her, but what she wanted to hear was “It’s okay to end up in a wheelchair. You’ll still be you, and we’ll help you live better by making the world accessible, as it should be.”

At some point in our lives, we all need some support. We believe we should create a world we want to live in.

Grace added that we need to move beyond an understanding of disability that is a medical model to a social relational and rights based model. Disability rights are human rights, to paraphrase and extend on Hillary Clinton’s view. It’s not just functional ability, it’s how we value people with learning disabilities as well.

As a result of decades of policy-making that has disadvantaged and excluded disabled people, disabled people earn less money and are provided less opportunities, yet are more likely to be loyal and have considerable spending power as a community.

This was indicated by The Purple Pound, which found businesses in the UK lose approximately £2 billion a month by ignoring the needs of disabled people.

Source: The Purple Pound

PledgeMe aims to not be like these businesses. We aim to empower businesses who employ or are run by people with disabilities through crowdfunding. We want to support those with disabilities who are creating their own projects or companies, and help to activate this community as a crowd of loyal supporters.

An example of a company already doing this through PledgeMe now is the Downlights equity crowdfunding campaign.

Downlights is a candle company that provides opportunities for young people with Down syndrome and people with learning disabilities. It started when Jenn was introduced to Tony and Emma Sykes in 2018. Their story of struggle combined with frustration and rejection when Emma, who has Downs Syndrome, was looking for work was the start-up spirit for Downlights.

Nicky, Emma and their father, Tony.

Downlights have partnered with MOXIE crew (part of Recreate NZ) to support their young people, and donate $1 from every candle sold to the New Zealand Down Syndrome Association and Recreate NZ.

Jack, a reserved and passionate Downlights employee has found a place he thrives, saying in his own words in an interview conducted by Grace Stratton that his job is “nice and easy in a small group.” The people who know Jack best expand on his words saying, “nice” means the people are nice and Jack is made to feel special and important. “Easy” means there is no confusion, as everything is clearly explained, Jack has no fear of making a mistake as he is assured a mistake can be easily fixed, and he enjoys working with the equipment and candle making ingredients so feels less anxious.

Jack is in the middle of the Downlights team photo above.

The Downlights candles are refillable, natural, beautiful, and soy-based. Jenn, with her experience in the candle industry, has really focussed on making every part of their process ethical.

It’s been hard to do something that big, with such a huge focus on positive impact. Harvard Business Review released a study last year that shows founders of social enterprises suffer from burnouts more than founders of typical companies.

They found “stress is a significant problem for social entrepreneurs. When trying to achieve commercial goals and give back to the community at the same time, these entrepreneurs are likely to overload themselves … and, consequently, deplete their personal resources.”

Things have been especially hard for Jenn and the team around the launch of their equity crowdfunding campaign. They launched within hours (if not minutes) of New Zealand’s Prime Minister Jacinda Ardern announcing the country would go into lockdown. Getting any media coverage (or even social media coverage) proved to be quite hard.

But Jenn and the team are pushing on through. They’ve hosted Facebook Lives with their team, including the Sykes sisters Nikki and Emma, with the MOXIE crew, including Grace Stratton mentioned above, and they’re over 20% funded now. If you love candles with a side of social impact, and would like a 20% discount for life, check out their campaign here: https://pledgeme.co.nz/investments/390-downlights-limited

NZ Down Syndrome Association has just released a new video of Nicky and Emma’s Story, the inspiration for Downlights, and the Downlights Story.

Disability Inclusion is work that is sadly still so needed, especially in the COVID-19 climate, where our disabled communities are feeling forgotten or worse, disposable. I read this article recently: “My life is more disposable during this pandemic”. One sentence from the author, Elliot Kukla, especially struck me: “Disabled and sick people already know that stillness can be caring. We know that immune systems are fragile things, and homes can’t always be left. Rest is disability justice, and right now it is one of our most powerful tools to keep one another alive.”

So please, light a candle or buy some coffee and let’s have a wee rest.

One of The Lucy Foundation’s partners, Department of Brewology, announces their collaboration.

Previous disability-focused campaigners which have crowdfunded through PledgeMe include The Cookie ProjectThe Independence Collective, and The Lucy Foundation. Aside from Downlights, another current disability-focussed campaign is this one for a man whose employment was set up by Recreate NZ.

Leave a comment

Your email address will not be published. Required fields are marked *