Growing Up with a Disabled Sibling

Growing up with a disabled sibling can be both a challenging and rewarding experience. Being the brother or sister of a disabled sibling with special needs, puts you in a unique position. Sibling relationships are a special bond. Whether your sibling has cerebral palsy, autism, down syndrome, a genetic syndrome or mental health disorder, you will understand them in special way. It is most important to remember that you are not alone in this journey.

According to a survey done in 2019, 4.3% of children under the age of 18 were living with a disability. Many disabled children will have a non-disabled sibling, which can affect the way that children experience family life at home. Often, for young children, the experience of growing up with a disabled sibling can be equal parts wonderful and challenging. First and foremost, children love their sibling exactly the way they are and children with disabled family members often develop greater empathy and understanding than their peers. But at the same time, siblings of people with disabilities can struggle at home. Studies show that siblings of disabled people may struggle with their sibling relationship and are more likely to develop depression than their peers who do not have disabled siblings, and they are more likely to feel isolated from their peers, feel a higher level of pressure to be “perfect,” and display behavior problems at home. As the sibling of a disabled family member, it can be difficult for peers to understand the dynamics at home, which contributes to the loneliness, and sometimes, parents are so consumed with caregiving that it can even feel lonely at home. At Sibling Advocacy, we want to create a community of people who understand what it is like to grow up with a disabled sibling, to share stories, raise awareness, and provide support.

What is disability?

The term disability is a broad term that encompasses many different conditions. The CDC defines disability as “any condition of the body or mind that makes it more difficult for the person with the condition to do certain activities and interact with the world around them.” Many healthcare institutions, define disability in terms of “impairment,” meaning a limitation in physical or mental function. The World Health Organization defines disability within three dimensions: physical or mental impairment, a limitation in the ability to engage in activities, such as walking or problem solving, and impairment when it comes to participating in social, recreational, or work activities. Disability can affect many parts of a person’s life including the ability to take in and apply new information, movement and mobility, taking on self-care activities, such as dressing and eating, engaging socially, and participating in work and school.

Disability can come in many different forms and even people with the same disability can experience the world in vastly different ways. Often, the disabled population is referred to in a blanket statement, which fails to take into account the diverse experiences of each individual.

What are the different types of disability?

Disability is a broad, umbrella term under which a wide variety of conditions can be found. Disabilities can affect a person physically or mentally and impact the way in which they live their lives. Disability can be further broken down into those that impact a person’s:

• Vision

• Hearing

• Mobility or movement

• Learning

• Ability to communicate

• Mental health

• Ability to learn, remember, or think

• Ability to develop social relationships

Intellectual Disabilities: Intellectual or developmental disabilities are a category of disability that affects a person’s ability to learn, reason, and problem solve, and may also affect social behavior and the ability to perform self-care tasks. The extent to which a person with intellectual disabilities requires accommodations can depend on the individual and the specific condition. Examples of developmental disabilities include:

• Autism

• ADHD

• Cerebral Palsy

• Down syndrome

• Language and Speech Conditions

• Tourettes Syndrome

Autism: Autism may fall under the umbrella of intellectual disabilities and pose developmental delays but is itself an umbrella term for autism spectrum disorders. While behaviors vary across the autism spectrum, people with autism may have a hard time communicating, impairment in social situations, and have specialized interests or repetitive behavior.

Physical Disability: A physical disability is a disability that can affect an individual’s physical movement, including walking, climbing, lifting, or carrying objects. Physical disability varies from person to person but may include loss of a limb, paralysis, deterioration of the muscles, or cerebral palsy and epilepsy.

Deaf: A disability in which a person has full or partial loss of hearing. Many people in the Deaf community do not think of being deaf as a disability - rather it is often thought of as cultural. When discussing the Deaf culture, a capital “D” is preferred, whereas when discussing the condition, a lower case “d” is preferred.

Mental Health Conditions: Mental health conditions or mental illness are umbrella terms for conditions that affect the mind, including depression, schizophrenia, bipolar disorder, anxiety, or personality disorders.

Advocacy and language use

When it comes to disability and advocacy, it is vitally important that the voices of the disabled community are at the forefront of any discussion. For a long time, disability service providers and caregivers spoke on behalf of the disabled community and often failed to represent their best interests. Today, there are still many organizations that claim to advocate for the disabled community but fail to take into account the actual needs and wants of the disabled community. When it comes to advocacy, the most important thing is to, whenever possible, listen to each individual member of the community. The disabled community is a diverse, multifaceted community comprised of unique individuals.

It is also important to be mindful of language when discussing the disabled community. Words or phrases that imply judgment towards the individual are often considered offensive. For example, “special needs” or “special needs sibling” implies a stigma against differences. Similarly, “abnormality,” “differently abled,” and “disorder” are also judgmental in tone. When it comes to describing non-disabled siblings (or other people), it is best to use the term “non-disabled” as a comparison. Words like “normal,” “neurotypical,” and “typically developing children” imply a hierarchy where non-disabled are labeled as “normal” and disabled children as “different.”

In conversation, it is good to be aware of identity-first language verses people-first language. Identity first language refers to when the disability is highlighted when discussion the person. On the other hand, people-first language establishes that you are talking about a person with a condition. For example, using identity first language would mean saying “they are autistic,” whereas people-first language would mean saying “they are a person with autism.” Whether to use identity-first or people-first language is often a personal preference and it is best to ask the individual which they prefer.

Common feelings for siblings of children with disabilities

Siblings of children with disabilities often deal with difficult feelings unique to their situation. Most of the time, siblings of children with disabilities feel a deep love and protectiveness towards their sibling. They are often more empathetic and are more understanding of differences than their peers. However, there are many challenging feelings that siblings of disabled children deal with. One challenge is that at a young age, siblings of disabled children have to grow up quickly and take on additional responsibilities around the house and in giving care to their sibling. This is a concept sometimes known as “parentification” - making young children feel like they are in many ways a part of the parenting process. This can make the non-disabled sibling feel isolated and rejected. On the flip side, not providing enough information to siblings can create anxiety as well. Children may observe from the outside doctor’s appointments and stressful moments at home and without enough communication from parents, it can be anxiety-inducing to watch and not know what is going on. Siblings may also worry about planning for the future, knowing that in the long-term, they may be the one taking primary care of an adult sibling with a disability. It is important for parents to keep the lines of communication open about the future well-being of the family as well.

Additionally, having a sibling with a disability can feel like an isolating experience. Parents may spend most of the time at home giving care to a disabled sibling and peers at school may not understand the situation and may even be openly hostile towards a disabled sibling. Non-disabled siblings may even claim that they are an only child to keep from having to answer questions about their family situation. This can often make non-disabled siblings feel like an outsider everywhere, with no one to turn to for support. Especially if there is a feeling at home like you have to be perfect or your challenges at school are not as important. This is where the need for a support group, such as Sibling Advocacy is so important.

Common feelings for siblings of children with disabilities

At times, growing up with a disabled brother or sister can be an isolating experience. In addition to advocating for your sibling, it is important to advocate for and take care of yourself. One way to do that is to connect with other people who have similar experiences. In addition to sibling advocacy, organizations such as the Sibling Support Project or Sibs exist to help connect siblings of disabled people together to build a community. For young children up through high school aged students, and adults, Sibs and Sibling Support Project provide platforms for sibling meet and discuss. Sibling Support Project gives young kids a place to play and staff who can facilitate more difficult conversations, while Sibs provides online support networks.

In addition to support groups, it is important to forge an open line of communication with parents. At a young age or even as an adolescent, it can feel as though you are being left out of the conversation about sibling’s disability and care. It can feel distressing to not know or fully understand what is happening with your sibling’s care when you have their best interest in mind. If you feel comfortably, have a conversation with your parents about how you you can stay informed and connected within the family. Further, it can sometimes feel like parents’ attention is fully on your disabled sibling, which can raise feelings of resentment. As much as possible, parents should establish one-on-one time with all siblings in the family.

Sibling Advocacy and storytelling

I established Sibling Advocacy in New York City this summer as a high school student, to create a platform on which siblings of disabled people can connect and form a community of advocacy. Sibling Advocacy is a safe space for young people to share their stories for the first time and support each other in advocating for themselves and members of the disabled community. If you have a younger brother, younger sister, older brother, or older sister with a disability, consider joining me and becoming a Sibling Advocacy ambassador today.