If I Had to Spend a Day in the City in a Wheelchair | VIVA LA VIDA × BEST: A Retrospective on the ‘Drawings of Life’ Campaign with Sisters with Disabilities

Over the course of a person’s life,

on average, three-quarters of that time is spent touching, listening to and perceiving the world;

one will smell one trillion different scents;

one will walk 72,000 kilometres;

one will meet 82,635 people;

and one will see countless landscapes.

However,

if one day,

you were no longer able to do these things,

how would you view life?

And how would you spend the rest of your life?

On the evening of 24 June, during an online symposium organised by VIVA in collaboration with the Le Yirong Social Work Agency in Tongzhou District, Beijing (formerly Beijing Disabled Sisters BEST), three participants offered the following reflections on life:

Gaogao:

“As the mysteries of the sea gradually fade away, I can see that tranquil mountain range in the distance. Unleashing my sealed fins and wings, I shall rush towards it without hesitation.”

Tatiana:

‘When I was a child, I always thought the bottom of a boat was uneven—otherwise, why would it rock when you were on board?’

Vivi:

“There’s a little seal in the picture. I hope I can be a happy little hugger living by the sea too~”

1. A Day in Our Lives

The Current State of Accessibility Facilities in the City

Xiao Fang (a pseudonym) was one of the participants in this event. To gain a clearer understanding of how the lack of accessible facilities in the city affects her daily life, we followed her around and spent a day with her.

8.30.am | Leaving the house: “We’ll just have to make do with the shortcomings in the facilities.”

To get round the steps at the entrance to the housing estate, we have no choice but to exit via the underground car park. The drainage pipes at the exit used to get stuck under the wheelchair, so we specifically raised the issue with the property management, and they installed a row of metal plates. The ramp at the exit is very steep, so Xiaofang needs to be pushed or use an electric wheelchair to get out.

Of the four entrances to the underground station, only one has a lift; the other three have escalators and steps. To reach another entrance, one has to cross a busy road junction. The steps in the underpass are also difficult for wheelchair users to navigate.

11.00.am | Leaving the house: “We’ll just have to make do with the shortcomings in the facilities.”

Xiao Fang planned to go for a meal with her friends at a restaurant in a nearby shopping centre. The restaurant had a lovely atmosphere, but once the waiting staff and other customers realised she was in a wheelchair, they kept staring at our every move, making us feel as though we were the centre of attention. The whole dining experience was rather uncomfortable.

12.30.pm | Going to the cinema: ‘It feels awful to be a burden to others all the time’

The cinema reception desk was very high; from a wheelchair, I couldn’t see the staff’s faces over the computer screen.

The accessible seats in the cinema were in the first three rows, and we needed the staff’s help to get seated properly. We enjoyed the film, but afterwards we had to call the staff over again for assistance; it felt awful to be a burden to others at every turn.

3:00.pm | Taking a taxi: “Sorry, we don’t have much experience with this”

When we hailed a taxi to go home, the first two drivers we flagged down refused to take us, citing a lack of space in the vehicle upon seeing someone in a wheelchair.

The third driver clearly had no experience carrying passengers with disabilities either. We explained that he simply needed to pull up a little closer to us so we could get in by ourselves; once inside, we would ask him to fold up the wheelchair and stow it in the boot. ‘I’ll have more experience next time,’ the driver remarked.

Some might say, ‘If it’s so inconvenient, just stay at home.’ Such remarks are rather callous. People with disabilities lead ordinary lives, just like the rest of us. It would be the real anomaly if we did not see them going about their daily lives.

When will people with disabilities be widely accepted by the public? When will they be able to go out unhindered without needing extra help? When will more people with disabilities be able to step out of their homes with confidence, without facing discrimination or undue attention?

We do not know.

2. Love, Respect and Equality

   The Views on Marriage and Romance and Personal Values of Sisters with Disabilities

When I Became the Beloved of an Able-Bodied Boy

During a round-table discussion, Zhang Hong (a pseudonym), a girl who uses crutches, shared with us her feelings of helplessness regarding the lack of equal treatment experienced by people with disabilities in romantic relationships.

“ 

Ever since I was very young, my parents have always told me, ‘Don’t look for a partner.’ I used to wonder whether it was because my body was different from others’ that I wasn’t worthy of being loved.

Later, I got into university and met a young man who really understood me; we got together. He was a great help when we went out; for instance, if we couldn’t find an accessible lift at the old railway station or a metro entrance, he would simply carry me on his back to take the escalator.

However, it seems our relationship didn’t quite click on an emotional level. Under various pressures, our relationship came to an end.

He said his parents would never accept a girl with a disability as their daughter-in-law, because in their view, marrying someone with a disability was something to be ashamed of.

His words caused me great distress. I suspect this is a very common mindset in many places where attitudes are still relatively backward.

Over the years, I have tried very hard to combat these attitudes with my own abilities and to break free from them. For example, by leaving life in a small town behind, or by seeking out people who have received a higher education or who treat me as an equal. However, these stereotypes about people with disabilities still cause me great distress.

”

“One should not belittle oneself because of one’s physical condition, nor market oneself as if one were a commodity. That is unfair to oneself.”

Resisting such attitudes and steadfastly upholding equality are the principles she holds dear.

At present, when most able-bodied people encounter people with disabilities, they tend to place too much emphasis on their identity as ‘people with disabilities’. Should we not, instead, treat them as equals, perceiving their souls as we would those of any ordinary person?

To love and be loved is, after all, the purest emotion that exists between people, regardless of status or personal characteristics.

When I Became a Mother

During the round-table discussion, another disabled woman and staunch feminist, Liu Li (a pseudonym), shared with us the challenges faced by disabled women as mothers in matters of marriage and romance

“ 

For many women with disabilities, their gender and the physical constraints of their disability constitute a double burden. In modern society, there is a push for women to have a second child and return to the family home; for women with disabilities, these expectations present overlapping challenges.

There are currently two prevailing views regarding women with disabilities.

One view holds that, once a woman with a disability enters a relationship or marries, she lacks the physical capacity to raise a child and be a ‘perfect’ mother. It is therefore suggested that they should not seek a partner or marry.

In some rural families, however, it is felt that since they have lost their function as labourers, their bodily function as women—specifically, the reproductive capacity of the womb—should be utilised first. ‘If my daughter cannot find a good job, I will first find her a good husband’s family. That way, she can be a good mother and bear children.’ Consequently, it is quite common in rural areas for families to have more and more children.

”

“Whether you live in the countryside or within a closed-off family, you must be financially independent and empower yourself; only then will you have a better chance of shaking off the influence of those negative comments.”

Financial independence and self-empowerment are her way, as a feminist, of fighting for equality.

In this era of free love, there remains a phenomenon whereby women marry not for love, but rather to fulfil their role as childbearers. Is this not, in itself, a form of narrow-mindedness and prejudice?

Women with disabilities are, first and foremost, individuals who can realise their own self-worth; only then should they be free to choose, based on their own wishes, whether to have children for the sake of a family.

They are entitled to the same love, respect and equality as everyone else.

3. A Life Unbound by Definitions

   The Vitality and Portraits of Women’s Lives

Different life experiences shape different lives; each person’s life is painted in different colours, composing a unique life story.

How do you see your own life? Is it passionate and vibrant, serene and tranquil, or courageous and free?

During the discussion session, many participants attempted to answer this question through a self-portrait...

Yu Jiao:

“I am a feminist with a disability and a staff member at BEST, an organisation for women with disabilities. In the painting, I am wearing a red Chinese-style cardigan and am on my way to visit a local museum in Norway. This outfit incorporates Chinese elements whilst exuding a gender-neutral beauty and a sense of coolness; I captured that joyful moment through painting as a way to relieve my emotions when feeling down and to cultivate positive feelings.”

Xiao Xiao:

“I’m a girl who uses crutches. This is a drawing I did on a box whilst preparing for my postgraduate entrance exams—it looks a lot like me. I have a slight tilt in my posture because I have congenital scoliosis. The smile on my face reflects the optimistic attitude I usually bring to life.”

Chen Zhi:

“I am a disability rights activist. This is a self-portrait of me—a little old lady in her fifties, wearing a cheongsam and spectacles, with a heart as passionate as that of a young person. This painting captures what I believe life to be: healthy, warm, optimistic, elegant and beautiful. It also serves as a portrait of those who care for people with disabilities.”

Human life is both insignificant and finite, yet also vast and boundless. Perhaps everyone is alone in their exploration of their own life, and perhaps, in the end, none of us can truly explain ‘what life really is’.

But it is precisely for this reason that life should not be defined; everyone should live their own unique, undefined life to the full, making it rich and wonderful.

This is true for ordinary people, and it is true for people with disabilities as well.

In her book "Illness as Metaphor", Susan Sontag writes: ‘In the social interpretation of physical disability, there is a strong tendency for the condition to be elevated from the physical to the psychological level.’ This statement may go some way towards explaining the various issues of stigmatisation and being treated as ‘different’ that women with disabilities face in their daily lives today.

During this event, we observed a common trait among the women with disabilities present—they were all resolute, courageous and undaunted by adversity. What they need is not loud slogans about ‘care’, but more practical, accessible facilities to support their everyday lives; not pity or being treated as ‘different’, but greater respect and equal treatment.

Let our sisters with disabilities truly ‘unleash their shackled fins and wings’ and, whilst the spring sunshine shines brightly, bravely set off towards the distant mountains and seas.

About the Organisation

Viva la Vida (VIVA) is a cross-cultural arts brand operating in over 60 countries worldwide, dedicated to documenting life stories through art, promoting cross-cultural understanding and social welfare. We invite people from diverse cultural backgrounds to answer the question ‘What is your life?’ through a painting, thereby documenting a variety of life stories and fostering cross-cultural understanding.

Over the past seven years, VIVA has collaborated with organisations such as the United Nations, Coca-Cola and Tencent to organise more than 400 events and collect over 20,000 life portraits, transforming individual expression into a bridge for cultural dialogue.

The Le Yirong Social Work Agency in Tongzhou District, Beijing (formerly known as Beijing Disabled Sisters BEST) is a social work organisation dedicated to serving marginalised communities, people affected by disability and local communities. Its services primarily take the form of social work initiatives centred on culture, the arts and the aesthetics of daily life; community research involving life stories and video documentation; and employment support and psychological healing.