A New Journey

Recently my daughter was diagnosed with cancer. I have worked in the disability field for over a decade now, but have not encountered discussions between cancer and disability. That doesn't mean it's not there, just that it hasn't entered my viewfinder. But now it has. And while the medical treatment is the same, I'm finding a social aspect of cancer that may be different when dealing with people with intellectual disabilities. I'm hoping that this blog will generate a discussion that will help me to learn.

Some of my daughter's peers who have disabilities seem to handle the news harder than her peers without disabilities. I get it, hearing someone you know has cancer is not easy! But there seems to be a greater sense of fear, needing their caregivers' and supporters' reassurances. Is it because they don't have much experience with cancer so they don't know its not an automatic death sentence anymore?

Have you experienced this?

All About Me!

I’m reading a book about the qualities of an introvert vs. being an extrovert. Me? I’m an introvert. One part of our makeup is stated by Sophia Dembling, “We like spending one-on-one time with good friends…Introverts don’t get lonely if they don’t socialize with a lot of people.”¹ This personality trait of mine affects how I interact socially and professionally. Sure, I love to talk to a group (no matter how many people are in the audience). And I can go to as many networking events as needed to share about The Arc and learn who might need what we do. But I mostly enjoy those one-on-one “meet and greets” where I can have in-depth conversations on issues we both care about.

When you support (or are) a person with a disability, labels are a way of life and often a means to the end for healthcare and funding. But, do you look at this person to see if their personality and environment suit each other? For example, is an extrovert who needs the social buzz living with an introvert who craves the quiet? Not wrong, but will require procedures that allow the introvert the ability to hibernate and the extrovert an outlet for their exuberance. Or is an introvert’s need to be alone seen as something to be corrected by a behavior plan, or is it validated in their plan of support (balanced by the encouragement for social activities).

My point is we are many layers and we live and react to life with multiple influences. Don’t let the disability become the only focus. We are talking about a PERSON with a disability and everything that goes along with being a person applies to them too.

Want to get together at this quiet coffee shop I know of to talk?

¹ The Introvert’s Way: Living a Quiet Life in a Noisy World. Sophia Dembling

Bring on the rain!

The grass in my front lawn is dry and brown. Flowers cease to bloom. Rain is desperately needed and would make everything better. (According to my sister, I’m supposed to water the flowers and tomatoes – who knew! I guess I need to go get a watering can.) 

The state budget impasse is making me feel the same way about my agency. The money will flow to local agencies sometime in the future and all the programs will begin again. But for now, things are drying up. Those who have a “well” to go to can keep things moving along until the powers that be move things forward. But some of us do not have this option or do not have the mechanisms in place to do so. And so our programs languish for lack of funds. And while we impatiently wait out the crisis, it is the people who benefit from our programs who will suffer, not those making the decisions. They’re still getting what they need. Oh yes, I know the arguments – “short term pain for long term gain”, and “it’s his fault for doing it this way”. But those sentiments don’t provide the resources to pay the bills.

It’s so disheartening. 

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?