Why your disabled child needs social capital.
Last week Kevin had an appointment at CHOP and we went to the Italian Market afterward. There’s one little Mom and Pop shop that sells excellent meatballs and sauce (they call it gravy, I do not). Anyway, I stopped in there and the first thing that caught my eye was this huge pile of parsley on the counter. And, a young woman was sitting there picking all the parsley leaves off the stems. I said something like “Wow, that is a lot of parsley.” I honestly don’t think I’ve ever seen that much parsley at one time.
The little old Italian lady smiled and said, “Oh yes, every day, every day we do this, the parsley, everything, from scratch.”
I went to the cooler doors, grabbed what I wanted then turned around to place them on the counter and pay. That’s when I saw it. A walker, sitting next to the woman who was doing the parsley. After chatting with her and her mom briefly, I surmised that this woman is likely intellectually disabled.
And that’s when it hit me: I was witnessing Social Capital in action.
This is a family, using what they have, to give their daughter what she needs. They helped her establish social capital. She’s a familiar face and fixture in the neighborhood and she has a job. Like her family before her, she is contributing to the Italian community in South Philly.
I’ve been thinking about that family all weekend. Kevin’s birthday is this week and it’s been on my mind more than ever. Because he turns 12 in a few days. Past the half-way point to 21 or 22, when all of his educational services will end. Let’s face it, with his high level of needs, our future is scary. There’s not much out there for him.
Since last year, I’ve been mulling over this idea of social capital.
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.
What is social capital?
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.
Going back to November 14. At our monthly Right to Ed meeting, our guest speaker was explaining waivers. Waitlists. 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 what 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.
For many reasons, people with disabilities are at a distinct disadvantage when it comes to social capital. Communication issues, environmental 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.
This 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 upcoming holidays are a great time to work on this. You’ll likely be around more people than usual and can let your child shine.
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.
How to build social capital
If you look online for tips on how to build social capital, you’ll find a ton of articles for the business world, but very few for our world. What’s more important is understanding the concept of Social Capital and how you can apply it to your household.
- Step out of your comfort zone. For introverts like me, this is the hardest. I’m not a social butterfly and trying to be one is exhausting. Still, I do it because of Kevin.
- Take your child on all your errands. Think of it more of an activity than an errand. My grandmother built her whole life around “errands” as she got older because many of her friends had died or gone to nursing homes. An errand can be drudgery and work, or it can be an outing.
- Shop and stay local. Let your local community get to know your child.
- Talk with people. Everyone. Cashiers, bank attendants, whoever. Strike up conversations and include your child.
- Volunteer. Look for a volunteer opportunity that matches your child’s interests and sign up. Take them with you.
- Get more involved in your church/worship. Look at their classes and social offerings and go.
- Piggyback sibling activities. Bring your disabled child as a spectator to all of their siblings’ activities.
- Hang out. Have you seen the movie Barber Shop? How much social capital is in a barber shop? Lots! The same can be said for some coffee shops, beauty shops and so on. Find your fit and start just hanging out once in a while. Our society moves so fast these days, we forget to just sit and visit.
- Fairs, festivals, etc. Whatever is local to you, go.
- Set aside time each week or month to just do this.
- Keep in touch with people.
Once your child is a familiar face in the community, the next step is to help them build relationships with people. Don’t get stressed if your child struggles with social skills or is non-verbal. It can be as simple as having them send a card when you hear a neighbor is ill. At the next church or fire company breakfast, ask if your child can sit at the table with where they collect admission. It doesn’t have to be complex, it just has to be participation. Which for many of us, is much more than they are doing now.
This is an excellent read on social capital. Take the time when you have the time, and read it.
More on Adulthood and Guardianship:
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