Sometimes, life issues great challenges. In this article, PlayMoovin’ invites you to discover the account of an extraordinary mother facing the challenges of her daughter’s disability. Here is a genuine life story which will certainly make you think about school inclusion and disability awareness.
Disability account: the daily life of a family
Marie has two daughters. The youngest, Léa is aged 15 years old and is suffering from a rare genetic condition. She has been using an electric wheelchair since she was 3 years old. She has coordination, gest, balance, speaking and sight troubles. Moreover, she has gotten a lot of complications because of her disease.
Until now however, she has been spared one the main characteristics of her disease: her susceptibility to fatigue. Her mother describes her has a “ball of energy and happiness”. She is always at full throttle! And between rehabilitation, school and sport practice, Léa’s schedule as well as her mother’s is always full.
Despite all that, not everything revolves around Léa in her daily life as “It is important for her personal growth”, her mother explains. On that note, her and her sister make a great team: they are very close and the older sister shares her passions with her little sister.
According to Marie, Léa has an “unusual mind”. She is not fixated on what she does not like. A smiling classmate who smiles at her is enough to make her happy. The rest does not matter. “She does not have the same reality as us” says Marie in her account about her daugther’s disability. “Sometimes, I find stuff to be hard and sad and it simply does not touch her. On the opposite, maybe there are things she finds sad and which simply do not even cross my mind.”
Humour is very important in this family and Léa is the first to laugh! All topics are allowed including disabilities. As Marie says, it is preferable that some jokes remain within the family because other people do not understand them.
Inclusion of a child suffering from a disability at school: Marie’s experience
When Léa’s disease was diagnosed, doctors told her parents that it would be useless to put her in an ordinary school. She would not be able to read and write. However, Léa is nowadays preparing her GCSE.
Léa’s thirst for learning
She has an insatiable appetite for knowledge! It is for that reason that her parents have invested a lot into her school. Léa is very academical and works a lot. With her smile, her joie de vivre and her irresistible learning desire, she is loved by adults who are kind to her.
But the whole situation remains complicated for the family.
Challenges related to school inclusion
Because of the daily challenges related to her daughter’s disability, Marie stopped working. This decision was taken as a family and she now just spends a few hours doing communication work for an association.
Indeed, if Léa has someone to help her at school, her mother types all her lessons during the evening and even includes links so that it is more understandable for her. When she is in class, Léa must be fully focused and because she is very much attracted to screens, she does not have a computer. Thus, her mother is rewriting all of her lessons.
In her account, Marie also explains: “When you don’t fit into a box from the start, it is more difficult. When you are confronted to a disability, you must create solutions, you cannot expect something to already exist to solve it.”
Marie is also wondering about the presence of an adult behind each student suffering from a disability. Yes, Léa is 80% disabled but how can she make friends while having an adult present all the time with her. “She is shown a great environment, but she can not live in it.”
And for Léa’s future after school? The reality of living with a disability may not be compatible with what Léa wishes to do professionally. Next year, she will be studying administration and management. On the side, she has an overflowing passion for sport and want to make that her job.
Sport and disabilities: Marie’s account
Sport: a catalyst for personal fulfilment
“Léa started to play wheelchair tennis when she was 6 years old. In order to play, she needed an adapted wheelchair. It is at this time that we found what we wanted thanks to PlayMoovin’.”
If you have never heard of us, we manufacture sport wheelchairs in the Puy-de-Dôme département called the FreeMoovin’. They are certified by the CERAH (research and study centre for the equipment of disabled people) and allow people with reduced mobility to practice the sport they want in a leisurely way. They are also used to raise awareness of disabilties among children or adults. What does the FreeMoovin’ have over other wheelchairs? Well among other things, it is way cheaper than a more traditional sport wheelchair because it is made of robust plastic.
But let’s come back to Léa. She does not only practice wheelchair tennis, her mother sometimes takes her to her climbing practice session. On that note, if one day you meet her you might be very impressed to see her climbing 12 meters just with the strength of her arms and legs!
But this year, Léa has chosen to practice athletics and continues to use a FreeMoovin’. Let’s see what her mother thinks of the wheelchair.
Marie’s opinion on the FreeMoovin’
“I love this wheelchair. It is very nice, practical and offers everyone the possibility to play together. What I also find really great is that it is made of plastic. While it takes a whole lot of time to clean up Léa’s electric wheelchair, it takes 5 minutes to do the same for the FreeMoovin’. I would love to have one at home.”
Marie is of course aware that the two wheelchairs do not have the same use.
Raising awareness of disabilities: a surefire way to undo stereotypes
Marie’s account: focus on discrimination
How is it possible to accept the fact that in a restaurant, people ask to change places because a person suffering from a disability comes to sit on a table nearby? This is a real situation that happened to Marie’s family on several occasions.
As she is sharing her experience of disabilities, Léa’s mother explains that changing the way people view disabilities is absolutely essential to live in a real inclusive society. It is why she is completely invested in her association with all her benevolence.
A voluntary engagement for families confronted to disabilities
Marie also told us how she tries to get things moving. Nowadays, she is the president of a parent-teacher association whose children suffer from a disability in Clermont-Ferrand. This association sits in a commission at the Departmental House for Disabled People.
For her, “school is the only remaining place where everyone lives together in the society. Inclusive school represents an additional difficulty which adds a system that does not really work. Even if numerous teachers are really great and get really involved in this principle, school is as of today adapted to 40% of the children.”
Marie already met the ministry of National Education staff as well as the one working for the French Prime minister to talk about this topic during the public health crisis.
The organisation of awareness activities
Back when Léa was in primary school, Marie was organising activities to raise awareness of disabilities among children from 1st to 5th grade.
1st grade pupils had an activity on visual disabilities; 2nd grade children had activities on hearing disabilities. In 3rd grade, students were learning about mental disabilities. Finally, 4th grade children were acquainted with motor disabilities and 5th grade pupils were initiated to wheelchair rugby.
The craziest part of this whole process is that after activities, parents would come to Marie saying: “Marie, because of you we cannot park on the spots reserved to disabled people anymore!”
Since Léa left her primary school, Marie passed the torch on to another association but she pursues her fight in other schools. In some years, she hopes that every middle school in the Puy-de-Dôme département will have sport wheelchairs.
For her, the Freemoovin’ allows to take the mystery out of disabilities. A student just has to sit on it to become aware of the moving difficulties a person with reduced mobility experience. In parallel, sport wheelchairs would be a true conveyor of sport inclusion for all the children suffering from disabilities in the region.
If we wanted to share the account of a mother who is confronted to her daughter’s disability, it is in great part so that it can impact the most amount of people. It offers a unique perspective on the challenges and victories this family experiences. Even if Marie uses most of her energy for her daughter and to her family, she very well intends to keep fighting against discriminations regarding disabilities. This has a long way to go. Marie ends this account by saying: «It is when disabilities will not be a topic anymore, that we will make progress on said topic.”
