"What about contributing to society?"

Last night, my sister and I were talking, and she posed an interesting question.  "Elee, what do I say to people when they say that Javi will never contribute to society?"  This question interests me, because it is inquired by many.  The idea is that people who cannot or do not contribute to society by financial means are somehow less human than those who do.  For example, there is an overwhelming anger held in our society for people who "leech off of the system"; those who do not work yet collect money from the government.  American culture teaches us that to be of value, one must work and contribute positively to society.  If you do not, you are relegated to a low social status and regarded as a failure.  This value is evident in our daily interactions.  When a person is introduced to another, one of the first questions asked is "what do you do?"  This is because we define a person by their work; what kind of contributions they make to the world.

So how does all of this relate to my Javi? Well, to be blunt, Javi will never contribute to society in the traditional sense.  He will never hold a job, pay taxes, or vote.  Not because he chooses not to, but because he can't.  I could describe the many tertiary ways in which he has already contributed to society through the people he comes in contact with and the inspiration he brings, but I want to be straightforward.  He simply will not contribute, and will use public funding to assist him in his life.  In fact, the tax dollars that those of you reading this pay will contribute to the education, housing, medical care, and personal cares of my son.  How does that make you feel?

Now, lets think about this even further.  If I had known that Javi was going to be severely disabled, unable to work and pay taxes, yet still chose to become pregnant and birth this child, then how would you feel? The question I truly raise is, is his life less worth living because of an inability to meet societal standards of value?

My response, of course, is no.  Disability, though it is relegated to the abnormal; is the norm.  Most people will experience short or long term disability at some point in their lives either through themselves or a family member.  People with disabilities, are people too.  They think, feel, experience the world in much the same way that those without disabilities do.  Many, many, many people with disabilities work and contribute largely to society through this, however,  some do not at all.  But they still deserve; no, they are entitled to a life. Additionally, society should consider the ways in which people can contribute to society in means other than through work.

Javier, as a child, contributes to society in many ways.  First, he has inspired my sister and I to work with and serve the disabled community.  Without Javier, we likely would not have chosen this path.  Next, he offers selfless friendship to anyone who gives him a chance.  He provides great love to the people in his life, never judging or demeaning others.  This all counts for something; actually, it counts for a lot. 

So, in response to my sisters question: "Elee, what do I say to people when they say that Javi will never contribute to society?"

You tell them, that he already has.

Buying a home

So here we are, a mom and a son.  Him, 6;  me, 25.  We're ready to buy our first home and plant our roots.  Call someplace our own.  We imagine fun summer days in the backyard, with cookouts and friends!  We think of evenings watching movies together, laughing joyously. We imagine our home.


But as I am finding out, our imaginations may be a little wild; and us: delusional.  Universal design is slowly catching on in public spaces, but this is clearly not the case in the home-buyers market.  I was expecting some challenges when considering homes built in the 1950s.  However, even new built town-homes have massive staircases.

For a person in a wheelchair, these staircases may as well be  a mountain, because no matter how you try, you're not getting up them.  Sure, for an added cost we could reconfigure the entire space; pending approval of an association; to make the home accessible.  This often includes widening hallways and doors, increasing the bathroom size, adding ramps or elevators, opening the shower space and lowering countertops.  OR we could always move into a senior living community- though not exactly fit for a 6 year old kid and a 25 year old mom. 

I considered moving into a house that has bedrooms on the main floor, with added space upstairs or down.  But I figured it may feel bad to live in a home in which you could only access part of the space.   I can see the scenario now:

Me: "Hey babe, have fun downstairs, we're all going upstairs to watch a movie.  We'll see you soon."

Definitely not an option.

For now, we will just have to take what we can get, and find a way to make it work.  But it makes me wonder, why does my son need to modify his behavior for the environment, rather than the environment modifying itself for him?

about us

I'm the 27 year old mom of a great little man with cerebral palsy.  He is 8 now, and as he ages, the challenges become bigger and bigger.  Him and I do fine, great actually.  But it's hard living in a world that is not accommodating; or even accessible; to my child in a wheelchair.  So, we have a story to tell.  We have daily adventures in this world: some good, some bad, some just confusing.  But we want to tell it.