How to be an advocate for individuals with MSS
Understand Ableism
Whether intentional or not, people can have beliefs, practices or language that discriminate against or dehumanize people with disabilities. Often a little bit of education can go a long way toward changing these beliefs. The first step toward being an advocate is recognizing ableism and its impact. Listen to the voices of people living with disabilities through books, articles, blogs, or social media. Nobody is perfect, especially when some ableist ideals are pervasive in culture, so forgive yourself and move forward with a new spirit of inclusion.
Learn about MSS
Take time to understand Marshall-Smith Syndrome. Familiarize yourself with the various ways the syndrome impacts a person’s mobility, speech, intellect, and health, but then appreciate that every person with MSS is unique!
Treat People with MSS with Dignity
Children and adults living with Marshall-Smith Syndrome are complex individuals. Just like anyone else, they have likes and dislikes, opinions, and favorite things. Make eye contact and talk directly to them… not “about” them as if they aren’t there! Be patient with those who use speech-generating devices or take longer to communicate. Where possible, give those with MSS the independence to make their own choices. Even well-meaning interference can thwart autonomy.
Respect Devices & Equipment
Mobility devices like wheelchairs and walkers are an extension of the user’s body. Do not touch the device unless you are asked to do so, as this could cause injury to the user or costly damage to the device. The same goes for medical equipment, communication devices, or bags carrying life-saving items. Teach your children the same. If you see someone or their caregiver struggling, first ask if they need assistance, and respect their boundaries should they say no.
Speak up!
Despite ADA laws, people with disabilities (and, by extension, their caregivers) still frequently experience accessibility issues. It is hard to recognize these issues until you are the person needing access. Don’t hesitate to bring up any accessibility concerns with schools, office buildings, parks, stores, and other public places. Share what you’ve learned about disability advocacy with friends, family, and coworkers so that the future can be more inclusive.
Spread the Word
Help us accomplish our mission by sharing our website, social media pages, and events with your friends, family, and colleagues.