Scoop Essentials: Disclosing Disability, Tackling A Dicey Proposition
Whether you’re out in public or in the company of family, talking about a disability and what it means to you or a family member can be tough business.
But with the right approach, talking about a disability can go from stressful to meaningful, says family therapist Diane Smith, who herself has a child with a disability.
In this installment of Scoop Essentials, Smith helps you find the right words and a healthy approach to explaining a disability to family, friends or even perfect strangers.
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Disability Scoop: How do you prepare yourself to tell others about a disability?
Diane Smith: There are several things to consider. What do we say to other people? Who do we say it to? What does it mean to speak aloud the diagnosis? Is it safe? How will the information be used? What about our child’s privacy? What will other people think? Will there be discrimination or exclusion?
In terms of preparation, I think it’s really a matter of examining all of these questions. Why am I giving this information and what is going to be done with it? I think it’s important for a parent to know what the disability means to them.
Then, who do you share it with? There’s a tendency for parents to not want to share the information about the diagnosis because they feel that it will prejudice people against their child. What can happen is that it can make it more difficult in some situations because people don’t know how to respond appropriately to the differences that the child is exhibiting.
Parents can think that giving their child a diagnosis makes them different, but in actuality it doesn’t make their child different. It just provides information about the child who already has some differences.
Disability Scoop: When is the right time to disclose a disability to others?
Diane Smith: I don’t think there’s a right way, a wrong way or a particular time or place. I think in circumstances where you believe it will benefit the people around the child to have that information. When we give information about our child it needs to be done in the context of educating other people about our child, while always keeping in mind what is going to be done with the information.
Oftentimes we think that if we don’t talk about the disability then no one will notice it. More often than not the disability is noticed and giving it a name helps everyone to understand better.
Disability Scoop: How do you broach such a discussion?
Diane Smith: My bias is always toward openness so I think sharing information about your child is very important. You can say my child has just been diagnosed and it’s really overwhelming for me and this is what I’m dealing with.
Personally, I might address my child’s difficulties in context. For example, my child is 21. When people say, “oh what is he doing now? Has he gone off to college?” I might say, “no he’s in a post-secondary program. He has special needs.” And then they might say, “what does he have?” Then it becomes part of the conversation.
Another issue that comes up is what to do in a public place when a child’s behavior draws a lot of attention. I think when people don’t understand something, they make up in their minds what it is. One of the hardest things about having a child with a disability, especially if it affects their behavior, is that other people make assumptions about them being a bad parent. Some parents respond by saying, you know, my kid has special needs and he really can’t help himself. That’s a way of providing information about the child that helps other people accept who he is. I’ve also seen people who have cards describing autism for example, or other disabilities, to give to people and say this is what’s going on with me or my child. They have a disability and this is where you can find more information about it.
The risk is that you put that information out there and not everybody really responds in the way that you need.
Disability Scoop: Is there anything your can do to avoid undesirable responses?
Diane Smith: Yes, I think it comes with time. It’s being able to say to people, this is what I’m going through and this is what I really need from you. My child has autism and I was just told that he’s going to need therapy 30 hours a week and I’m feeling really overwhelmed. One of the things that might be helpful to me is I have some information and I would love it if you would read it. And I would love it if you would ask me questions about my child every once in a while. People don’t always understand how to respond to this kind of information and it can be overwhelming.
Disability Scoop: What are the most important things to remember when telling other people about a disability?
Diane Smith: So much has to do with where you are psychologically in processing this information. It’s important to say this is what is going on with my child and then tell them what you need from them and include things like I want you to continue to see my child for the amazing little person that he or she is. Ask me about my child, about any meetings that I’ve gone to. Follow up. Being able to put out there to other people what it is we need and want is helpful.
Disability Scoop: What should you expect from others when you tell them?
Diane Smith: What I think we all would love to expect is to be supported. We don’t want people to minimize it, like oh, I bet you he’ll be fine in a year or two or comparing that child to another child that you know. What we’d all like to expect is for somebody to just listen and know that they can support you in this difficult time that you’re having without giving advice.
Of course people might say these things and we just need to be able to say, you know that’s just not very helpful to me right now. I know you want to fix it, but you can’t fix it. I just need a friend or I just need to be able to say it out loud.
Disability Scoop: You’ve talked a lot about the idea of saying it out loud. What role does that play?
Diane Smith: I think it’s the idea of telling our story. One of the things that I think is important any time where we’re in the grieving process is to be able to tell our story in some place where we feel it is safe. I don’t mean announcing it on the radio, but just to somebody who feels really safe. Speaking about something helps to integrate it into our daily lives rather than it being that thing over there. This helps us learn to, if not accept it, then at least learn to live alongside it.
Disability Scoop: Is it different to discuss a disability that’s obvious versus hidden?
Diane Smith: That’s a really tough one. Our kids are listening to us all the time. We don’t want them to get the impression that we’re whispering something about them. I think it requires some discretion.
There’s no formula for it. There’s no handbook. Sometimes we may say too much. Sometimes we may not say enough. There are certain circumstances where information given to a teacher or a scout leader or a soccer coach helps them understand our child. But here’s the thing, I think when we talk about our child’s disability we have to provide more than a diagnosis. We have to talk about the child in terms of who they are. I have a child and this is what he’s good at and this is what he struggles with. So there’s less of a focus on shining a light on their disability and more of a focus on what other people can do to help this person.
Disability Scoop: If you’re a parent or caregiver, how should you tell your child with a disability or their siblings about the disability?
Diane Smith: There are a lot of people who have different feelings about this. My bias is toward openness. If parents have a level of acceptance and they are able to see their child’s disabilities as just part of who the child is, then we can start to talk to our kids about how everybody has some differences. The things that are going on with you, they actually have a name for it. This is what scientists call it. This way it doesn’t become their identity, but they have a way of explaining why some things may be more difficult than others.
My bias is toward a matter-of-factness about the information that we give our child and then help them to find the words to explain to other people why they might have some difficulties. I think that it’s the same with siblings. All of this has to be done meeting the appropriate developmental age of the child, not just the chronological age, but meeting their ability to understand.
There comes a point where it almost seems unfair for a child not to have the information that everybody else around them has, especially when a child comes into adolescence. Once they have a sense of what particular difficulties they have, they can begin to advocate for themselves and say what they need. For example, a child can say I really have a hard time concentrating. I have attention deficit disorder so what I need to do is to sit in this particular place in the classroom and here’s what I need help with. Not that it’s an excuse, but it becomes a way of asking for what you need.