Who Are You?

On Sunday, Pastor made the comment, “What defines you?” I’m defined many different ways – through my gender, relationships, work, social activities. Sometimes the roles combine and the traits I bring to one are learned from another, like coming from large family allows me to function in environments with noise and confusion.   

As a parent, my children and I struggled as they were growing up with who gets to pick the role. Think 10 year old girl wanting to dress like 20 year old woman. Hmmm. Not happening. Mom got to decide this one. Or my 16 year old that graduated at an early age and was working, driving to Philly on I95. His employer got to decide that he was a grown man much to the consternation of his mother who learned of it as she asked, “How was your day today?”

Where I struggle with it now is with my adult daughter who has a disability. I want so much for her – including a life defined by things other than her disability. But she has her own thoughts on what defines her. So at times we’re at odds over how she’s defining herself. But is it my place to make these choices? Does her disability mean she gives up autonomy (freedom from external control or influence; independence)? My other children made choices I didn’t agree with and I’m sure I made some that made them roll their eyes. Even as progressive as I hope I am, I get caught in the trap of thinking I have the right to choose for her.

Another way this is manifested is when as a parent we have trouble letting them be defined apart from us. For example, when a person moves out of their family home and into a group home. Parents stay involved, sometimes too much. Who decides how the room is decorated or where they go on the weekend? There are no pat answers. And, believe me, I am not pointing a finger. These are areas I wrestle with. Do you? Is it hard for you to let them be a person apart from you with their own wants and choices? 

Risky business!

I am thinking of trying something that has some risk to it and I am weighing risk vs security. On the one hand I would really like to do this, but on the other side it will affect those in my life – my family, my fellow employees, my social network. So even though the choice is mine to make, fear of the consequences holds me back.

Fear keeps us from doing things that are risky. Sometimes that’s a good thing – think of a 5 year old on top of a high wall. The fear keeps some kids from jumping (and may save a trip to the ER). But the experience is missed. The lesson learned from trying. The lesson learned from hitting the ground.

People with disabilities many times are not allowed to weigh risk vs security. The risk is removed from their lives by the people who care for and about them, or by rules and regulations that protect and limit liability, or in consideration for those in their lives –housemates, staff, parents. But the difference is that someone else is making the decision for them – deciding if they should stay on top of the wall or jump.

Not all risk has negative consequences. Many times the risk becomes reward as the experience opens doors that fear kept locked leading to growth. Kids who jump may learn how to land and become world class gymnasts. Think of a person with a disability considering getting a job. Very risky. Getting there, doing what you should, explaining your needs. And what happens during bad weather? Sometimes we hear of parents who discourage their adult son or daughter from getting a job because it’s so much safer to have them in a day program. Safer for all concerned.

What do you think? Have you been in a situation where risk won (and you’re sorry)? Or perhaps security won (and looking back you’re sorry for missing the experience). 

I’m still trying to decide. 

Me Too!

State budget talks are under way and the press is reporting how it affects the different perspectives – education, pension, state stores. A minor mention is made of “human services.” Hmm. That term means nothing to those not utilizing those “services.” As it is in terminology, so it is in real life. Hide the pain, hide the people so that we don’t have to be faced with someone else’s need. If we saw it, we might have to make a choice to “look away” or “help” and it’s so much easier not to have to decide. It worked when folks were sent to an institution as children – help but don’t see, someone will take care of them. It works in other segregated settings – someone is taking care of it, I don’t have to think about if it’s the best way or if there are new ways to give them support during the day.

Families are hurting. People need help. Kids are graduating school and there is no money available to provide any “service.” No money for “services” means the child with a disability is left sitting at home with nowhere to go and losing the skills that were developed over the years. Because they cannot stay alone, mom or dad has to quit their job to stay home too. No money for “services” means a woman trying to find a job is not able to get someone to help her be gainfully employed because funding employment supports is not a priority – even though we would get a federal match 4 times what we spend (that’s like going to the grocery store where they’re offering “Buy One Get 4 Free” and not taking the other four.

The fault lies with us too. If every person or family who needs the “services” called their legislator or wrote a letter to the paper or stood up and said, “Me Too!” it might be different. Some don’t because all of life’s energies are going into making the day work from dawn to dusk (and many throughout the evening hours). Some don’t because when you’ve been ignored for so many years, you accept it as normal. Some don’t because it seems it will do no good, so why try?

So legislators continue to look away. But people still hurt.