Leo Rosten said the purpose of life is not to be happy—but to matter, to be productive, to be useful, to have it make some difference that you lived at all.
Samantha (Sammie for short) has experienced loss so many times in her short life. She was not born into a loving family, she did not have a mother who was willing to take on the world for her, nor a father who would work his hands to the bone to provide for her. She has both an intellectual and physical disability. She has spent most of her life in a residential facility she calls home.
Sammie was part of the first group of children from the Residential home who started attending the Umthi Special class. This experience changed her life. At Umthi she had purpose, she mattered, she was productive and useful. She was somebody.
The Umthi unit is run as a school and therefor learners exit the unit at the age of 18. The staff arranged a graduation ceremony for Sammie at the end-of-the-year concert. A dress and graduation cap was hired, and a lot of fuss was made of her graduation. She was over the moon! So at the end of the year she finished at Umthi.
As the new school year began Sammie could not understand that she could no longer attend Umthi. She became depressed, she started losing weight. Her behaviour changed, she refused to speak to the Umthi staff when she ran into them at the Home, she started hurting the younger children. Her behaviour made it impossible to keep her in the ward she was staying, she was moved to another ward where there was more hands-on care. She felt rejected once again and the loss she experienced was too much to bear, not only for her but for all of us who were part of her life. We had to do something to show her that she had value, that she mattered, that she had purpose.
And so because this wonderful girl needed us to make Masandé happen, the dream became a reality. On the first Tuesday of June 2017 we decided to open the doors to Masandé rather than wait for the right moment, right tables, right chairs and all the right equipment. We would improvise, we are good at improvising, we will make do, we are good at that too, we run where angels fear to tread. Masandé would be for the over 18’s what Umthi was for the under 18’s.
A week after Sammie started at Masandé she was back in her old ward. She was in a routine, her behaviour changed and she stopped hurting others. She still did not want to greet the Umthi staff, but this too would change. I visited them in the second week that they were up and running. The three Masandé trainees were busy doing their dishes after lunch. Masandé was nothing more than a fold up table with a basin filled with soapy water.
Watching as they were standing around that table washing, drying and packing away their dishes I was filled with such sadness, not because of Sam’s disabilities or because she lived in a residential facility and had experienced loss and rejection so many times. No, my sadness was for all of us on the opposite side of her world. For us who needed the right job, the right titles, the right car, the right address. Who felt that we did not matter enough without all those things. All Sammie needed was a fold up table, a basin full of soapy water, a few dishes that needed washing. All she wanted was a place where she belonged and where she felt she had a purpose. … but to matter, to be productive, to be useful, to have it make some difference that she lived at all.
Masandé is a project of the Down Syndrome Association Western Cape (DSAWC). We run this project with the Sivuyile Residential Facility on the grounds of Stikland Hospital. Masandé means “let us prosper”.