Sometimes, when you have a disability, other people feel that they have a right to control or affect your body in ways that are unnecessary, unhelpful, and at times even painful, emotionally and physically. Strangers pat us on the head in public, acquaintances we don’t know too well hug us, and sometimes people provide physical assistance without being asked. While these actions seem nice and may be meant with only good intentions, it happens so often that for many it starts to feel like a violation. People with disabilities have just as much of a right to personal space and body autonomy as anyone else, but sometimes it can be harder to assert.
When you have a chronic illness or a physical disability that requires a lot of doctors visits, it can become normal to allow doctors to examine you physically because it’s what they do. It’s sometimes their job to poke and prod but it’s in a clinical setting, so we accept most if not all physical touching as appropriate and necessary, even when it’s not.
The same can be true for caregivers. Many of us can have issues with boundaries with hired caregivers because at times we are not afforded that freedom and privacy. It is difficult to be modest when your caregiver has seen you without clothes on, or helped you with going to the bathroom.
And some have been physically disabled our entire lives. When this is the case, privacy and independence can mean different things, and can be even more difficult to establish. Unfortunately, this can leave people very open to abusive situations and assault. When you don’t know how to assert your independence or don’t want to be rude to someone who is seemingly helpful, it becomes a slippery slope towards uncomfortable or even dangerous situations. People with disabilities are much more often victims of abuse then their able bodied counterparts. One study suggests that 49 percent of people with intellectual disability will experience 10 or more sexually abusive incidents.
For many with disabilities, people feel so entitled to touching us and it happens so often that it also becomes difficult to distinguish between different types of touching. Is this a clinical touch or a friendly touch? Is it a romantic touch? Is it okay and am I comfortable? Does the necessity of this touch outweigh my concerns? Is it a necessary touch? Why is this person touching me? Sometimes, such as in clinical settings, touch that feels uncomfortable is necessary for the doctor to do his or her job. Sometimes, unfortunately, this isn’t the case, and differentiating between different types of touching is a life skill that should be taught to all kids, especially those who are more vulnerable.
One thing that is most important, admittedly much easier said than done, is that people with disabilities know that it’s okay to say they’re uncomfortable. Too often, people who are physically vulnerable get little to no say in what happens with their body. They have to be touched to be transferred; they have to be physically exposed when being assisted by others; they have to consent to touching by agency personnel if they utilize home healthcare. But there are limits to that lack of control. Children and adults with disabilities must be able to have more say than someone else about their own body.