On March 25 there was a World Down Syndrome Day event at the European Parliament. The theme of the event was: Together against loneliness.
Esther Volleberg and Inge Volleberg were there to represent Inclusion Europe. Esther spoke about her experiences with loneliness and Inge connected it with the work we do at Inclusion Europe.
There were three other self-advocates who spoke about their experiences. European Down Syndrome Association shared the results of a survey they had done about loneliness of people with Down Syndrome and their parents.
Overall the event was a success.
But at the same time there was something uncomfortable about the event.
Even though the room was filled with members of the European Parliament (MEPs), family members, organisations, all people who say they want to improve the lives of people with Down Syndrome, the self-advocates in the room were not treated like everybody else:
- When self-advocate Ana Paula shared that she loved her boyfriend, people laughed (a little too loud).
- When Esther shared that she did not have a boyfriend and felt lonely because of it, people laughed again.
- Many MEPs came before the conference only to take pictures with the self-advocates and waiters with Down syndrome. Only a few of them actually attended the event to hear what the self-advocates had to say.
- One MEP touched Esther’s hair multiple times and squeezed her cheeks, while telling her how pretty and cute she looked (in a language Esther did not understand).
They would not have treated someone without Down like this.
These are not things you do when you fully respect the other person.
This is no way to treat people and respect their dignity.
This is ableism. This is not okay.
“People treat us differently,” Esther said at the end of her speech in the European Parliament. And it was true even there that day.