Self-Advocacy: Shared and Independent
Simply put, self-advocacy is the ability to speak for yourself and your own interests and needs. So, why is that important for individuals with disabilities? Having a disability and being a self-advocate confronts society’s ableist attitude head on. It gives disabled individuals the power to control their own lives. It’s a skill that needs to be taught, especially for those individuals who have developed learned helplessness - the mindset that their disability prevents them from being independent and successful.
Learned helplessness can occur when a child with a disability sees themselves as dependent on their parents and other caregivers for all aspects of their lives. Over time, the child can become a passive participant in many aspects of life. If the child believes that if their parent/caregiver does A for them because they can’t do it for themselves, and B is a lot like A, then there’s no point in trying to do B for themselves. For example, self-dressing can be difficult for a child with a motor disability, and may take a good bit of time. They CAN do it, it just takes longer. Now, picture a school morning where the family is rushing to get dressed, eat breakfast, gather their school supplies and get out the door to the bus stop. It's faster and less stressful for the parent to dress the child. That makes total sense, and is completely understandable. But the child may be learning that they CAN’T dress themselves, so at school when it’s time for recess, the child may wait passively for someone to put their jacket, hat, and mittens on for them. They won’t necessarily ask for help - because they have developed learned helplessness.
As parents/caregivers, what can you do to prepare your child for a time when they will take on their own responsibilities and become self-advocates? Let’s look at a possible continuum of self-advocacy development, and the steps parents can take to move their child along this continuum.
Parents as First Advocates for Their Child
Parents of children with disabilities wear a lot of hats during those first years - they are the parents first, then caregivers, cheerleaders, and advocates. It is up to the parents to navigate the system, to obtain medical and therapy services, to acquire needed equipment, to pursue critical benefits (Katie Beckett/deeming waiver, insurance), to ensure access to early intervention services, and to create and sustain social circles (play groups, inclusion at neighborhood playground/gatherings/parties) for their child. That advocacy role can be a crucial one, and will certainly need to continue for some time. However, looking down the road - parents need to be creating a plan for their child that will result in a young adult capable of advocating for themselves -another hard task when it can be a huge struggle just to get from one day to the next. Let’s take a look at some examples of how to accomplish that task.
Beginning Self-Advocacy Instruction with Their Child
One of the earliest steps toward self-advocacy is the development of the child’s ability to express their wants (make choices) and needs (help, more). While young children will still need their parents to be advocates for them in most situations, there are daily activities that can be used to begin allowing the child to convey their wants and needs. The child will learn that they have a voice, and that their voice can be heard - a crucial first step on the road to self-advocacy. This is a skill that will benefit the child as they grow older and move into the school setting.
Shifting More Responsibility to Their Child
As the child progresses through school, the parents and teachers should be working in tandem to develop the child’s self-advocacy skills. These skills will include the child’s ability to recognize and request accommodations specific to the school setting. It may also include developing the child’s ability to explain their disability and needs to peers. At the age of 14 the law requires that the child become a part of the IEP team. Assisting the child to develop self-advocacy skills will ensure that they are able to become an active member of the IEP team rather than a passive participant. Of course, the parent will still have the final say until the child reaches the age of 18. This growth period offers the opportunity to guide the child into making appropriate requests.
The Child/Young Adult as a Self-Advocate
As the child matures and enters high school, the role of the parents/caregiver begins to change. Rather than acting as their child’s chief advocate, the parent’s role starts to shift to one of support. Step back and be the child's sounding board. Allow them to exercise their voice, requesting accommodations and modifications for themselves as much as possible. During this stage, social activities can become a huge part of the child’s school experience - attending or participating in sporting activities, dances, clubs, etc. Their self-advocacy skills should stretch to encompass these types of activities as well. This can prepare them for the world of post-secondary education (if that is their choice) and entry into the “real world!” It can come as quite a shock to students entering post-secondary education (and to their parents as well) when the college will not recognize or speak to the parents as advocates. At this point it is all on the young adult to navigate the system, with parents assuming a background role. So you can see why it is important to instill and cultivate the skill of self-advocacy at an earlier age.
For a Child with Significant, Multiple Disabilities
What about those individuals with significant intellectual/physical/multiple disabilities who may not be able to advocate for themselves in the general public? Parents may need to maintain their role as their child’s advocate while promoting choice as much as possible for their child. Here are some ways to give your young child/adult with disabilities the ability to voice their wants and needs, respecting their ability to advocate for their own needs within their abilities.
The development of self-advocacy skills is critical to a child’s ability to assume management of their own lives. As parents you have a role in guiding your child as they grow their skill set. This continuum is one way to assist your child in forming their own range of abilities in the area of self-advocacy, increasing their confidence and sense of achievement.