From being a mother to a child with congenital deafblindness who advocated for her daughter’s rights in Mexico to becoming a leader for families of children with multiple disabilities and deafblindness in Latin America, Maricarmen Schleske is an example of a mother leader, historian, and activist who believes in forming collaborative networks among families.
In this interview, Maricarmen tells us about the importance of finding beauty in life, even within the pain.
I have always believed in families. I have always had faith that they can be agents of social change. Families have that strength and we can help them transform their daily lives.”Maricarmen Schleske
My daughter, Dubhe, was born and diagnosed with congenital deafblindness 32 years ago. From the beginning, I had to search for answers. At the time in Mexico, deafblindness was not recognized as a single disability.
On top of that, the special education schools were divided by disabilities, so there were schools for students who are blind, for those with intellectual disabilities, etc., but none for children with deafblindness. I realized that the schools and their professionals did not know the strategies involved in caring for a child with Dubhe’s needs.
After a few years of having Dubhe attending a private school in Mexico City, the law finally changed in 1995, and the special education schools became the “Centros de Atención Múltiple” starting to combine children’s education with different disabilities in one school. By 1995, my daughter finally entered Mexico’s educational public school system, something I always wanted.
What you have to do is to learn about the disability but not suffer because your child has a disability. Disabilities are not all similar, you have to know it and live it, but not suffer because of it.
You can’t take it away or send it elsewhere, but you can learn to live with it. You can find the beautiful things that life can give you within the pain and within all the difficulties. There is always beauty.
The first time I heard about Perkins was around 2005 or 2006. The Department of Public Education invited Clarita Berg (a family leader) to work with students, and my daughter, who experienced behavior challenges at the time, was included. Some years later, the same family leader invited me to a family workshop organized by Perkins.
I hesitated because Dubhe was older and thought I had nothing to share. The workshop took place in Ixtapan de la Sal, Mexico, for two days. After sharing our experiences and learning as families, we established specific commitments.
One of them was replicating what I had learned in the group with other families. So from the beginning, I seriously committed to this goal. From this moment, I started working with family groups at a special education school in Mexico City.
The first family group began with five mothers and one father. I was then invited to conduct workshops for families from other regions in Mexico. This work also took me to Argentina, for a meeting promoted by Perkins, among other places, which put me in contact with many families of children with disabilities in Latin America.
Finally, in 2019, Marta Elena Ramirez, Perkins Representative for Mexico, invited me to participate in Project Pixan to work as Family Coordinator.
These experiences opened up an incredible panorama of many possibilities. I began to learn more and grow as a mother and as a human being, because I learned from mothers who had so much experience.”Maricarme Schleske
We are currently shaping the role of the Family Coordinator for Perkins programs in Latin America. I think it is a significant job that can give you many fruits while connecting to the work done by the Perkins Educational Coordinators.
The Perkins Educational Coordinators already have a lot of work in the schools, and to work with families, it is easier for parents to open up among peers. You can bring several professionals, but when putting a mother-in this case, a family coordinator- in front of a group of other families, they realize their commonalities, which builds camaraderie.
The commitment of my work is to spread knowledge because this is something it should not be held, and to help people as much as we can so they can grow. You never know where there could be someone who can create an impact.
Another important part of this job is to work for the families’ humanity so they can find themselves again as individuals. We discuss issues as basic as remembering your dreams before having children.
There are so many of them that don’t dream anymore. In life, you must hold the hand of the one who knows more than you, and you have to recognize the knowledge and the experiences of others. This is what allows one to grow, which is why I try to work with parents, so it is not only about their children going to school but also about their learning as well.
Undoubtedly it is emotional, they always have an open wound. That is why it is so important to work to reinforce their self-esteem and their understanding about themselves. For example, it can be important to talk about the transition to adult life, but we need to remember that we are talking about this with someone that is hurt and may not give you the full attention necessary to focus on the topic.
But if you have empathy and you manage to find common ground, then you can find their attention. First thing to address is that these are happy and balanced families, so they can work in finding solutions to the daily difficulties. Another relevant point is that these families need to be heard. They have so much to say.
I have three kids, and overtime I learned how important it is to empower the siblings and provide them with security, not only the parents. When they were all very young, the relationship was not easy, especially due to Dubhe’s behavioral challenges.
Parents need patience to teach the siblings and the parents need to give the example. Once they are adults they know how to care for their sibling with disabilities and there’s nothing more precious than this.
Now that my daughter Dubhe is an adult, what I like the most is that she increases her ability to be curious about new things. At the beginning she may be hesitant, but later she always goes forward and gets involved in the new experience. I really like to be in her company, to hug her. I don’t need to be doing elaborate activities. Just knowing she is there and she can use her hands to caress me, that’s enough.
This interview was translated and condensed for clarity