Invisible Revisited

Picture yourself as being invisible. There could be some upsides to this, in a super-hero sort of way. You'd be able to  hear and see things that you wouldn't ordinarily have access to and that might be interesting. You might feel safe in your anonymity, especially if you have any sort of social anxiety. You would be able to float through life as an observer and would not have to face the social risks of daily life such as humiliation or non-acceptance or even dislike. The downside would be that you would be lonely and belong nowhere. Floating is no way to live a truly human life.


Sometimes I see that we treat people with intellectual disabilities as invisible, even in this day of forward-thinking. We, as a society, are all doing better at treating people with disabilities with respect and equality but there is still room for growth.


One area I see the invisibility is in our conversations with others. Two staff people might be having a conversation about what they did for fun the night before. A person with an intellectual disability might be waiting for the next activity to begin and be standing with these two staff members. They are permitted to be present yet not fully included in the conversation. Worse are the conversations that we are having about other people that we should be talking privately about but we continue on as if the person standing there does not understand, or worse, that it does not matter that they heard.


Another area of invisibility is found in meetings. As a part of our services in supporting people with ID, we are required to have many meetings with and about them to determine what the person wants to achieve out of life and how they are going to get there. I'm glad for these meetings as they remind me that we, as an agency and a society, do believe their lives matter. These meetings are also important to the person with ID; some of them come in dress clothes and suit and tie because they understand the importance. But then, we people with typical intellect start running the meeting, talking to each other and not the person whose meeting it is, making decisions about their life that are not necessarily what the person wants. Some meetings are better at including the person with ID than others.


It takes intent and creativity to involve and include a person who cannot effectively communicate or fully focus on a long meeting around a table or a conversation in a group. Seems like a challenge worth undertaking to make another person feel visible, especially someone who may never have felt fully included in society.

Working Together

The other day, our agency received a simple email complaint from a parent wondering why our services for his son did not achieve excellence. He was specifically concerned about the quality of activities his son was offered during the day. At the end of his note, he asked if there was anything he could do to help.


I have worked a long time in the field of developmental disabilities and I have witnessed numerous complaints on how our services are delivered but never an offer to help and rarely an idea as to how we could remedy the problem. People working with and for other people will always present problems that need solutions. Working with people is rewarding but imperfect.


At my nonprofit agency, we are hired to provide comprehensive and supportive activities that promote growth and independence for people with cognitive disabilities. It's a tough climate these days, though, being able to provide excellence with current budget and staffing constraints.


The solution may be to accept this parent's offer to help. There are resources that we may not be utilizing effectively that would be virtually free. As a parent whose daughter receives day habilitation services and group home services I recognize this tendency to want to criticize without offering help or solutions, as if it is some ethical strength to have recognized a flaw or mistake.  Could the answer be as simple as all of us working together to improve services and solve problems, not just in criticizing but in taking action?

The Hope For a Happy Life

It is so simple. All we parents want for our adult children is for them to be happy. We think we know what will make our children happy - career, success, money, home, car, friends, marriage, kids. When we have children with disabilities, we learn to change our goals because our children may not enter the typical success pathway. Or maybe we come to realize that it's not our goal to begin with. Can we let go of our goals for our children, whether disabled or not, and let them be whatever makes them happy? Can we stop feeling guilty about who we thought our children would be and let them just be? All I want for S is that she live a happy life based on her own goals. I went through some grieving when I realized she would not be living the life I had hoped for her. And then I let go.

Existential Crisis ?

S is now 35 years old. She's been living in her group home geared toward adults with various developmental disabilities for about 4 years now. Everything has been great up until just recently and now S would prefer to spend her life in bed. Everyone is sad for her and her support team is trying to figure out why she is trapped in this malaise. Rather than looking at the easiest, simplest answer, I tend to make things complex. One of my first thoughts is to wonder if S is leading a fulfilling, meaningful life. Can a person with an intellectual disability have an existential crisis? Well, I think so. I know there is a common misconception that people with intellectual disabilities are eternal children, eternally happy, but they are human beings with the same human needs for belonging, productivity, and meaningful activities as the rest of us. When we want to figure out why S wants to spend sometimes 24 hours straight in bed, not eating, not taking care of basic needs, there could be a number of things going on. She could be physically ill, depressed, anxious, bored, overwhelmed, tired or mentally preoccupied and she has not been able to tell any of us why she won't get out of bed.  We are all trying to support S to live a great life but it is on our terms, thinking we know what is best for her. Maybe she is starting to understand that she is not going to have an intimate relationship with another, that she is not going to be a mother. Maybe she sees that she is not going to own her own home, get married, go to college, drive a car. She did have those dreams years ago and other things to look forward to.  If all of the rest of us have the ability and right to design a life that is meaningful, how do we help S and others like her to do the same? Will that be enough to get her out of bed?