Blog

Raising the Voices of Siblings: Ken Ferreira

Ken Ferreira is on our organization’s Board of Directors (BOD). Participating in conversations about how our area agency operates, sharing resources and stories with others on the Board, and discussing issues that impact those with disabilities and their families – these are some of the major aspects of being on the Board of Directors. Ken said that even though sitting on the BOD has been a positive experience, there is a good chance he wouldn’t be on it – or even know what Community Crossroads is if it weren’t for his sister Marybeth who has Angelman syndrome. 

“Marybeth has taught me more than any person without a disability. She has taught me how to root for the underdog and accept people for who they are and where they are at in life,” Ken said about his sister. He said Angelman syndrome is a genetic developmental disability that impacts people cognitively, socially, and emotionally. The condition impacts people in ways such as: delayed development, intellectual disability, problems with speech and balance, and seizures. 

A memory from school that sticks out in Ken’s mind is when he walked into the busy cafeteria and found that his sister had been placed against a wall by a paraprofessional because her behaviors were not “age-appropriate”. Seeing that a paraprofessional would treat his sister that way, he knew he had to speak up and become an advocate for not only her – but for everyone who has a disability. “It was my first time realizing someone with a disability may be treated differently. It felt like a catalyst to advocate for her in all settings,” he said. 

Marybeth has impacted just about every aspect of Ken’s life – from his career path to the way he treats people, to the way he votes. “When I stand in a voting booth, I think to myself ‘how would this candidate or situation impact Mary?’ The vote I cast isn’t about me, but about her,” Ken said. Even though Marybeth is socially, cognitively, and emotionally anywhere between 3-4 years old – Ken understands how legislative decisions can seriously impact her and many others who experience a disability. 

Currently, Ken is the Vice President for Student Financial Services at Franklin Pierce University. “I think having someone in my life who is dependent on people has helped shape my outlook,” Ken said. Being understanding of people’s financial situations and needs is a skill that his sister helped him realize at a young age.  

Ken occasionally drives Marybeth to places such as doctor’s appointments. “Over the summer she had to have surgery and I was told that Marybeth could only have herself and one other person in the waiting room because of COVID protocol,” Ken said. He added that he was told this by someone with no understanding of the assistance his sister needs and what would be necessary in order to answer any needed questions. “People associated with Community Crossroads or other vendor agencies – they understand and go through these types of situations. Some people in the community, however, have never experienced it and don’t know how to act,” Ken added. 

He highlighted the relationship between siblings can often have a different dynamic than a parent’s relationship with their kid who has a disability. “Sometimes a parent of a child with a disability will go through a period of mourning because there is something affecting their child. In my own experience as a sibling, I don’t recall ever going through mourning. Marybeth and I grew up together. The sibling relationship is different because the way their sibling acts and looks is the only way we know. Usually, they will treat their sibling the same way anybody else would treat their sibling,” Ken said. One journal (The Adjustment of Non-Disabled Siblings of Children with Autism) backs this up and also found in their research that “enhanced adaptability skills, empathy, and tolerance” are all common results of having a sibling with a disability. 

The dynamic between siblings will usually change throughout time, as it has throughout Ken and Marybeth’s lives. “I am her guardian now, so I am personally responsible for her. When we were kids, we were both just kids. Now? The decisions I make impact her livelihood,” he said. 

If you or someone you know is the sibling of someone with a disability – and would like to be interviewed and featured in a future “Raising the Voices of Siblings” story, reach out to Colby Dudal at cdudal@communitycrossroadsnh.org

 

 

 

Recent Posts

Archives

Categories