Author: Hanne-Maria Leppäranta
Like many other people working with disability issues, I’ve made a career from combining my personal experiences as a parent with my professional training.
Today my son learned how to write. Emil is twelve years old, and he lost the ability to speak when he was two due to autism and learning disability. He has been writing his wishes on our wall calendar at home for some time, but today was the first day he wrote to communicate at school. His teacher was thrilled and sent me an enthusiastic text message.
Today I got two angry and worried messages from parents of disabled children, who felt that disabled children have not been considered enough in a recent survey we sent out. They were upset about the upcoming legal change of offering personal budgets to clients in Finland’s social services.
Sometimes sitting on two chairs is a strange experience.
As a parent, I understand and share the fears. But as a civil servant, I’m expected to downplay my own experiences and hide them under the camouflage of professionalism to retain neutrality. Neutrality is expected, because then people in power are more willing to listen. My knowledge and opinions become more convincing when I don’t disclose the fact I’m a parent. My opinions stop being opinions. Through the professional camouflage they attain credibility which sometimes baffles, angers, and amuses me. I try to pick my battles to guard my fake neutrality, because I need to be taken seriously to support the change I believe in. Often the best I can do is to question the inequalities, raise concerns and speak out when people working on the change are heading in an utterly stupid direction.
I can relate to the parents who contacted me. The very reason why I am so happy and relieved for my son’s new skill is that ability to write unassisted makes it impossible to question his ability to make choices. When a person communicates through assisted writing, symbols or pictures, somebody always asks if the intent behind the communicated choice or a wish belongs to disabled person, the assistant helping him to communicate or the interpreter of nonverbal communication. After the doubt is voiced for the first time, his choices are taken less seriously, and the room for legal interpretation is open. Is he truly able to make his own choices? Or is his mother making choices for him? Is he really eligible for a personal budget? Can he direct a personal assistant by himself? If he can’t, he is not eligible for assistance. Receiving a personal assistant in Finland is a competency question.
When my son was a toddler, I was frightened for his future. Kela, the Finnish social insurance institution, offered us adaptation training courses after disability diagnosis. There were three courses available according to age groups; one for children under six, the second from ages 7 - 12 and the last course for youth over twelve. We went on the first course when Emil was still a small boy, and I remember asking what happens to children like mine when they grow up. What will it be like? What happens to him? How will his teenage years go? What will I do with a boy taller and larger than me if we still can’t communicate? What if he becomes violent? Where will he go after school? Will he be happy?
I was told that “we’re covering those issues on the youth course. Apply in few years and then we can speak about it!”
That answer was one of those things produced by our welfare system I refer to as utterly stupid.
Ironically, the answer I desperately needed came from a person I have never met, a year later when I was travelling on the bus to an Easter church service held for students in Emil’s school. Another mother with her son got out from the bus on the same stop. The son was already taller than his mother, and he held her hand when they started to walk towards the church. I followed with my own, smaller boy behind them. At some point, the mother stopped, and said something to her son. She used sign language to support words, and smiled. The boy answered, and they continued walking. It was the answer I needed, and I felt like crying.
When I asked what happens to children like mine, I didn’t want to wait six years and go on another adaptation training course. I wanted to know that even if our lives are different, things will be all right. That life will go on, even if we won’t look like a typical teenager and his mother, and he still needs to hold my hand when we walk over the zebra crossing.
This is the message I wish I could pass on to mothers who write to me at work and worry about incoming change. It won’t be perfect. I can’t promise the system we’re trying to create will be flawless, but hopefully it will become a part of a larger chance where disabled people and their families can get what they need now, even if they are not in the right age bracket to receive information reserved for the youth adaptation course.
The publisher is the Centre for Welfare Reform.
A Parent in Camouflage © Hanne-Maria Leppäranta 2018.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.