Practice What You Preach

It's good to have conversations around consent, privacy, and healthy relationships.  But, as the saying goes, actions speak louder than words.

If we tell people with disabilities that they have a right to say no to anyone touching them, but when they complain about bear hugs from grandma and we tell them it's not a big deal, what are we really telling them?  Or when we treat people with disabilities like children and give them a "pat" on the butt (which shouldn't be done to children either, even in a joking manner)?  THese may seem innocent, but the key here is that we are saying one thing and doing another, and that what seems okay to us may make another person extremely uncomfortable. 

Another example is people with disabilities who need help bathing or dressing. Even though they may not be able to do these tasks independently, when someone else is doing them it's still important to ask permission before touching any private areas.  Even if the person is not verbal, they can often still understand what you are saying, and should have the right to at least know what is going to happen next and that you are respectful of them and their body.  When staff or family is in a rush, and just starts touching any part of the body they feel they need to, this can feel extremely invasive and humiliating, even if the person is not able to express those feelings.  These actions, after telling them their rights to bodily autonomy, send extremely mixed messages. 

We are basically telling them not to let strangers touch them, but it's okay for family, friends, and staff to do whatever they want.  People are so afraid of attacks from strangers, and while it's good to explain that strangers are not safe, 90% of sexual assaults are perpetrated by someone the victim knows.  So it's equally, if not more, important to teach people with disabilities assertiveness skills to use with people they are familiar with, too.  Possibly even including yourself.

And what about sharing information?  We tell people with disabilities to keep their information private, not to overshare, and to be careful about what you share online.  But then I see parents and staff who post photos of someone with a disability on Facebook, or hear them sharing a very private experience a person with a disability had to friends or other staff, and I wonder if they asked the person first if it was okay to share these experiences with other people.  I once had the experience of going to a home to do intake, and the mother insisted that I come see her son, who had a disability and was non-verbal, in the bathtub.  I declined, as I felt this was disrespectful to her son who had never met me, but this is a perfect example of how we forget that people with disabilities have rights when they are not able to speak for themselves.  Consent is not just important for physical touch, but also for sharing information, even if the person is not their own guardian.

I think we are all, at times, guilty of not following our own advice.  But we all need to take a serious look at the messages we send to someone with a disability.  We can't tell them they have the right to say no, then not even get consent to touch, perform personal cares, or share information.

And, as always, if you have any questions, please don't hesitate to contact us!

Thanks for reading,

Ellen Merker

Founder, Heart Consulting LLC