Friday, July 26, 2013

Lose the labels.

He wants to just be Benjamin. He wants to excel as Benjamin. 

 In the van, alone with me, he voiced the reason he gets moody every time we talk about people we know with cerebral palsy who are older than him. And it has rattled around in my head for two days. I have analyzed it, thought about it and tried to determine how I can move forward differently.

He wants to be Benjamin. He wants to accomplish his goals, go to college, start a career as Benjamin.

Can you hear what he is saying? Believe me, it is not that he wants to be some form of hipster with only one name. No. My 16-year-old is saying he does not want to be "Benjamin, with Cerebral Palsy," or "Benjamin, the kid in the wheelchair." He is tired, he said, of being compared to people with Cerebral Palsy or in wheelchairs. He wants to talk about his similarities that go beyond the CP or the wheelchair. He doesn't want to pick a school because it is good for people with disabilities. He wants to pick a school based on his goals, dreams and preferences.

I hear him. He makes some very good points (Cause whether he ever uses it or not, this teen has mad debate skills!), and I feel a sigh all the way from my head to my toes.

I want that for him, too. I want him to be judged on his merits. It is one of the reasons we homeschool. He turned in a pathetic excuse for a paper and was given an "A" because the teacher said it was so hard for him in his wheelchair, etc to do better. I knew the truth. Benjamin has amazing writing skills. He could have blown her socks off that day (6th grade) but he had learned that little was expected of the kid in the wheelchair, so little was produced. I have spent the last few years working to turn that mentality around.

And yet, yet, I still define Benjamin and Mason as my sons with cerebral palsy. I still define myself as a mom of special needs kiddos. Shoot, I define our family as a special needs family.

And the reality is, as I explained to Benjamin, we have to think about the Cerebral Palsy some times. We have to find the right parking space to get him out of the van. We have to plan for surgeries and doctor's appointments. We have to find the accessible doors for buildings and the accessible seating at shows, restaurants, etc. And frankly, we do have to consider which college offers the best services to students with special needs. 

But his declaration feels like a wake-up call. A call to do what I scream about wanting others to do -- to look past his wheelchair and what he can not do and look at what he can do, what he excels at, what his strengths are.

And if we are growing here, working on re-aligning the things that define us, then I should probably climb on board. Because coming out of a season of surgeries (with one more to go), I feel the labels are defining, confining and frankly isolating. I feel the labels are weighing around me, setting me apart when I want to engage with others and limiting my activities in unhealthy ways. So it is time to re-engage. Time to focus on the things we have in common with those around us, rather than the things that make us different.

I won't lie. It feels like a tall tall order. And one that won't be accomplished in my own might. A favorite verse pops into my head even as I type:

"I can do all things through [Christ] who gives me strength." Phil. 4:13 (NIV)

All things -- even rip off some labels and throw them away.


GreenGirl said...

We hit some similar chords in our blog too. I like Kelly's comment make it a factor and not a focus.

K said...

I do see Benjamin's point...labels can be so frustrating sometimes. I love that he wants to look past his limitations, and I love that he wants people to see HIM, not his disability. I feel the same way, and I've written countless posts about that. But - and this is just my take - I think it's also important, as you said, to realize that CP is part of who he's not *everything*, clearly, but it is a part of his life.

For me, personally, I have embraced my CP. I look at it as a positive in my life. Yes, it's a challenge, but it has taught me so much and it has helped shape me as a person. It is very much a part of who I am, so I love to connect with others with similar challenges. So I don't mind when people compare me to others with CP, as long as they realize that our CP may be our only similarity. To me, it's no different than comparing two people who work in the same field, or two people who share a hobby - there's nothing wrong with recognizing similarities, as long as we realize that each person is unique. :)

AZ Chapman said...

K sums it up nicely be sure to cheak the blog tomarrow .

Krissy said...

This struck me just where I needed to be struck this morning... as I think about what little A's life will be like in the future, I often bring into comparison with others with her syndrome, or how other families with kiddos like her do things...

Not thinking that she too needs to be defined all on her own merits... like you said, there will be times I need to consider her syndrome & how it's affected others like her, but what a great point for your son to bring up. Thank you- I needed to really read this today. :)