It was my longing, when I grew up and started to build my own life, to prepare afternoon tea and sit around the table with my loved ones in a cozy space with good smells coming from the oven.
Eventually I got married, had two children and became a single parent later. It’s been more than fifteen years since I baked two kinds of cakes and prepared finger sandwiches and fruits to share for tea time.
Looking back, I have always tried my best to have our happy table which creates richness and warmth at heart, whether it is an easy day or a stormy day.
However, soon after I became a single parent, feeling fragile inside, with the responsibility for my children, somehow the headwinds intensified and I started being treated in harsh ways.
Even before that, the more I worked as an independent woman, the more I was subjected to grandiose harassment from every angle. Once I was a truant student in secondary school but went on to graduate school and acquired advanced expertise and skills. However, the harder I tried, the more counterproductive it might have been.
Unexpectedly I have come to realisations that;
“A single mother,”
someone calls me in a dismissive and nuanced way, that
I’ve become a severely ill patient with
“a incurable disease”
falling in non-designated incurable diseases and could no longer live without a wheelchair, and that
I’ve been regarded as
“handicapped”
as a whole. I’ve been spoken to in baby talk as if everyone with a disability is mentally retarded, though I am a university graduate student. It is common that they refer to me as
"disabled."
I have been labeled as a 'minority' by many people, who have stamped me as an object of discrimination and pointed at me with all kinds of negativity, contempt and abuse.
But I was still me.
I have been the same from birth to this very moment while most of my cells have been already replaced.
No matter what they call me, if it’s not fair, I resent it like a little child, and I live as motivated as I was when I was born. It is so fortunate that I have been able to live unchanged in this aspect.
I now spend most of my waking hours in bed, and when I go out I cannot do without my reclining wheelchair.
As soon as I became such a differently-abled person, strangers on the streets would call me out, questioning
“Why are you out and about!?”
More than once, I’ve been suddenly shouted at by strangers, "Why are you wandering around? It is as if I were an abomination coming across in their ways (although to be honest, I think it is those two-legged people who are uglier, rather than me leaning back in my wheelchair).
Since I am a single parent, I am the only one who would attend the parent-teacher meetings at my children's school; so I am out. That's all I do.
The sensation of those moments was similar to the one I had experienced before when I was still healthy; I was waiting for a traffic light at a pedestrian crossing with my children on the front and back of my child-carrying bicycle. Someone suddenly grabbed the back of my bicycle on the rear wheel and shook the whole bicycle, threatening us with violence.
This violent person was saying something to me. But the unconnected behaviour did not make any sense, and thus those strange words from that person could not remain in my memory since I don’t find abusive words in my vocabulary.
Too often people mistreat us rudely or strangely even though we have done nothing wrong.
Why? Is it because I am a woman alone?
Is it because the Japanese tradition does not value the people in need of care?
Is it because I am a person with disabilities?
What’s important for me is that I make sure the children are healthy and well taken care of, and I do the best I can; however I was astonished and appalled that there are some people with the mindset who make it more difficult and dangerous for others in life.
Wheelchair or no wheelchair, life is fuller and richer for us who have been living it well. And I am still me.
◇
By the way, did you know that for half a century a system of 'no concurrent benefits' has been in place whereby when a lone parent becomes disabled, the lone parent support services they could previously receive are to be taken away, or their disability pension is cut off in exchange for the lone parent support?
This was the case until the law was amended in the spring of the year before last (2021).
Disability pensions are the result of the history and wisdom of mankind, attempting to guarantee livelihoods by compensating for the part of the population who are unable to work due to disability. However, until the revised law came into force two years ago, the support for single parents was unilaterally taken away and terminated.
My life with children was unreasonably driven into a corner by this strange system.
As a parent it was unbearable to have to stand by and watch not only our daily problems but also my children's future being shrouded in a thick cloud of darkness. As we researched, we discovered that we were not the only ones who had suffered over the years but also many other parents and children had been pushed to the brink of life and death.
In those days I had been ill, suffering from a fever of over 38-39 degrees Celsius every day, and the doctor had ordered absolute bed rest for me. However, I was the breadwinner of the family, a housewife who was responsible for running the household, and I also devoted what little energy I had to one of my children’s bullying incidents at school.
Meanwhile I had become so exhausted from the pain of my illness and had been in bad condition that I couldn’t help but long for the state of those who had passed away before me as they had been set free from all sufferings.
Yet, the thought surged to my mind in the middle of sufferings was the system that had allowed discriminatory treatment.
'This is all too much! I can't die like this!"
It was like a cry from the soul. After a while, my body tried to breathe again and wriggle ahead.
As soon as this weak little human being obtained an unshakable will, the ordinary and familiar things began to shine like jewels one after another. The faint glimmer at first has turned into torrents of light gradually, so shining!
Although I had already lost a lot of my freedom by then and I’d been introverted to begin with, I started crawling out of my hospital bed with little strength left in me, sometimes wearing away my life and drove my motorized wheelchair then. I began to reach out to the people, explaining they should please help me.
The electric wheelchair with a recliner is a piece of modern magic and a part of my body, giving me the 'legs' to carry my bedridden, crippled body.
◇
All around is darkness
There's nothing but darkness
and "alone"
In my heart is the light of life
Life is a seed of hope
I had no idea of how much more time I had left but sincerely wished to connect my light, which was as small as a pilot fire, to a world with more lights spreading.
Don’t give up!
No setbacks!
Go for it and struggle!
These words are passed on from my respectable seniors who have become accomplished researchers to me who was a novice and inexperienced one.
Whereas I used to find myself sitting still with my children at the bottom of dark waters so often, I determined to start a campaign to improve the country's laws with a little life experience of a nameless ‘someone alone.’
Though we were like penguins just waddling along, the next thing I knew was that the children began to flap their wings, as if in the blue sky, and to swim out into the ocean that is full of light.