I tend to get serious and somber after a holiday break. The reason? Well, most of the time, I have just spent every waking hour with Kevin. Sure, I love him to bits and love hanging out with him. We went to Philly and handed out food to homeless people. After that, we poked around the city and had lunch. Later we watched Christmas specials on TV. And, like most other days, I take care of most of his ADLs. I plan his calendar, his events, his activities. No one invites him to do anything. As far as a disabled person with social capital, he has none.
That’s why I get somber. As I spend these extended periods of time with him, I have to wonder. Is this it? Is this what we are going to do from age 22 on? How many times can we drive into Philly? How much TV can we watch?
Because let’s face it, with his high level of needs, our future is scary. There’s not much out there for him.
Since November 14th, I’ve been mulling over this idea of social capital. Have you heard of it?
The first time I heard of the idea, the mom who was telling me didn’t even know what she was talking about. But she was talking about social capital, and how much she wanted it.
Every year I speak to students at the University of Delaware about special needs advocacy and stuff. It’s no secret that my child is in a very restrictive school setting. Last time I was at UD, another mom was there with her daughter who was about the same functioning level of Kevin, but she was out of school. The topic of schooling came up, and we discussed inclusion settings versus restrictive settings and so on. This young woman had also spent her education years in a very restrictive setting in Delaware.
And mom regretted it. When asked what her biggest regret was–that was it. When asked why, she stated that she would have sacrificed any skill gains she made at the smaller school, for having a community around her that she would have gained at a large public school.
She regretted not taking advantage of the public school system to build social capital. She didn’t use those words, but those were her thoughts.
Back to November 14. At our monthly Right to Ed meeting, our guest speaker was explaining waivers. Wait lists. Adult programs. Day programs. It’s not a pretty picture. The wait lists for any type of waiver are long. Then, once you have your funding, there are no programs.
Our speaker’s advice? “Create your own. You’re going to have to find or create your own program, there’s not much out there. Build your social capital.”
She advised us to learn about social capital and evaluate our own situations. So I did.
And I cannot say it enough. Take a half hour-5 minutes to read this post, 7 minutes to read the article at the bottom, and 18 to watch the TedX video. It will be time well spent, I promise!
“If you don’t go to somebody’s funeral, they won’t come to yours,” ~Yogi Berra
How many people would come to your funeral? That’s one measure of social capital.
What is social capital?
Social capital is a concept that has been around for a while. It has recently been adapted and adopted by the disability community to apply to us. From Wikipedia: The term generally refers to (a) resources, and the value of these resources, both tangible (public spaces, private property) and intangible (“actors”, “human capital”, people), (b) the relationships among these resources, and (c) the impact that these relationships have on the resources involved in each relationship, and on larger groups. It is generally seen as a form of capital that produces public goods for a common good.
Wow, how boring. Tell me again why I need to worry about this?
Social Capital Definition-social capital and special needs and disabilities
When your disabled child has no social capital, they spend their adulthood in your basement, watching TV or playing video games.
If you had a crisis right now, who would you call? What does your resource list look like? That is your social capital. It’s the value that you offer people in their lives, and that they bring to you. It’s networking. Sure, it’s nepotism to some degree. For example, being able to call up your friend who is a librarian and saying, “Hey, can we try a volunteer program with Kevin at the library?”
Can you call your firefighter neighbor down the street and asking if he knows of any tasks around the firehouse that your child might be able to do? That’s social capital.
It’s getting your child used to the community that they are in. And the community used to being around your child. Inclusion and acceptance. And inclusion means contribution!
“Social capital is named as a key ingredient in many programs to help people improve their lives, including finding work, improving health, and enhancing social integration. It is also seen as the way to make communities better.”
Why parents don’t build social capital for their disabled kids
If you’re in a mild panic, like me, at the thought of your child having zero social capital, don’t stress or beat yourself up over it.
First, it’s a soft skill. Many soft skills get overlooked. We want our child to be able to read a bus schedule. We forget to help them build relationships with bus drivers.
It’s work. It is! And our plates our full. It is soooo much easier for me to grocery shop without Kevin. So I do it! But what is more beneficial to him? Well, taking him, letting him have mundane conversations with cashiers and allowing the store to get used to seeing him there. Right?
For many reasons, people with disabilities are at a distinct disadvantage when it comes to social capital. Communication issues, environment issues and aversions, stigmas and stereotypes, lack of accessibility, lack of transportation–I could go on and on as to why disabled people struggle to fit into their community.
Here is a TedX talk on Social Capital and Disabilities. This guy is really good, talks often about Social Capital + special needs and disabilities. You can buy his books here.
Which is why, we as parents, have to work twice as hard just to get our kids half as far.
Moms, this is going to fall on us. The bus stops coming when your child is 21. Then what? What will they do? We need to have built up a community of people who recognize our kids’ value and what they have to offer. Our kids are going to need people who will give them a chance.
Ask any county agency about this and I swear they’ll tell you that it happens. An elderly couple has a child with disabilities, they take care of the child at home. They die. A neighbor calls around trying to find help, an agency steps in and now you have a 40 or 60 year old disabled adult who will be institutionalized. Their entire world turned upside down. It happens. Often.
Don’t let it happen to you. I can already see that I am on that path. They need to have their own spot in the community.
We all need to have this on our radars. The holidays are a great time to work on this. You’ll likely be around more people than usual and can let your child shine.
I will follow this up this week with ideas on how to build your child’s social capital.
There are many scholars who think social capital is more important than any skill learned. I hope they’re right. Because social capital, I can do.
More on Adulthood and Guardianship:
This is an excellent read on social capital. Take the time when you have the time, and read it, please.