Tuesday, June 10, 2008

What Should We Tell Them?

Outside of my office window I have seen lines of young graduates since at Temple there is a event hall used for many programs such as Graduation. Looking around my office, I also see a lineup of Disability Studies books from theory to autobiography to poetry. I then glance up on my wall and see my degree, which I earned many years ago. All of this caused me to reflect on the youth with disabilities who are today's graduates.

In many ways, their experience of life and their micro and macro worlds are quite different than my generation of peers with disabilities. Certainly this is a great accomplishment for society, but then reality sinks in and I realize that in many ways the youth of today are facing the same challenges of discrimination and stereotypes as we.

So what advice can we give a young person with a disability who has dreams and aspirations and may still be innocent of the thorns that may wound the spirit and bruise the ego? Do we tell him or her about the different theories of social repression experienced by those in any minority? Do we speak of making activism a relentless activity that consumes all your energy and concentration? Do we deconstruct for him or her the inequality of privilege and how this nebulous concept is ironically very concrete and palpable in one's daily existence? Should we explain how to be skeptical and wary of employers who may seem receptive but who are just skilled at understanding the Americans With Disabilities Act, and who don't want to be accused of discrimination? And last of all do we espouse the ideals of independence, and how one must do everything at the sacrifice of their own comfort and simple life pleasures to prove their independence?

Naturally these rhetorical questions imply a set of values that should be questioned by scholars and other proponents of disability rights and culture. Although the social and political climate in which I grew up in many ways was thought of as progressive and liberating, I am now understanding that many of the ideologies which I osmonically inhaled were variations of the dominant social culture's values and beliefs. I hope that my advice to youth with disabilities might be just a little bit less demanding and a little more empathetic of the totality of their person. I hope that among the words of wisdom I would give is that everyone has their own wisdom inside. That they should spend equal if not more time and energy enjoying themselves and their peers, having fun, being reckless, not being bound to a regiment of goals. Spend the days and evenings exploring life through laughter and yes, through love. Love and be loved. Be empowered by being yourself, by being weak when you feel overwhelmed, and by reaching out when you need others. People who are able-bodied do this all the time. They just don't have it formalized the way people with disabilities are expected to go through a certain procedure of accessing help.

My last piece of advice, which probably will make a lot of people within and outside of the disability community wince, is be damned with independence. It is not the measurement of one's value. There is nothing more courageous and genuine than saying, "I am confident and comfortable enough in myself that I know I need you to help me get through or even just be where I am."

6 comments:

Greg (Accessible Hunter) said...

Wow great post !

Anonymous said...

Amazing. Now, can we open up dialogue about what having a disability in today's society means and how we take for granted the advancements of the preceeding generation. In sum, are these rights today demanded or appreciated?

Angela L. Braden, Writer, Speaker, Professor said...

This was wonderful. I'm going to link this over at my blog.
Angela

Danielle said...

Carol, this is great. It is a struggle as a parent to do this for your child anyway, give them "just enough" independence. But when your child has a disability, it is even harder--do I push him more and more, or do I give him some slack? Am I making him be MORE independent than I would otherwise? He is also my only child, so I don't know and will never know how I would have treated another child. Just a lot to think about, and these are things I struggle with every day. But you are so right--ENJOY yourself, have fun, etc. As my great uncle used to say, "You can't beat fun!" :)

Carol Marfisi said...

I would definitely like to support any initiative that you would have in beginning a discourse about considering the next generation into the teaching of disability studies. It is important because this is a social-political movement to keep evolving in tandem with the natural evolution of our culture and society. You can email me directly at cmarfisi(at)temple.edu

Thanks for taking the time to read our blog.

Daisy said...

I don't even know what independence is anymore, truthfully.

I've been hanging with the "permaculture" people, and they use the term independence in an energy sense... and to hear them talk, nobody is independent of, say, crude oil, electricity, etc. They constantly talk of "getting off the the grid"--towards full "independence"--they mean of capitalist energy companies, going solar, local food, etc. And even so--the independence they speak of is a communitarian independence, not a singular, individual independence. (i.e. they don't expect to grow every single vegetable themselves, but live in a community that shares/trades such knowledge and skills.)

To suddenly go to other blogs and hear about "independence" for some disabled child? Sounds weird now. If we were "independent"--we wouldn't be fighting over other people's oil, now would we?

Great post, sorry I am late commenting, but then I usually am!