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? 

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. 

Letting Go

At times I have said the common denominator among parents who have a child with a disability is the thought, “What happens after I’m gone.” 

I just finished a book that stated the thought so clearly, “You’ll always be wondering: is my baby all right tonight? Is he sleeping peaceful? Is he happy and surrounded by people that cares for him? Is he in pain? Is he lonesome? Does he need something only I can give him, but he ain’t got no way to let me know? Lord, please keep my child safe tonight. That’s when I found faith, when my young’uns growed up and I had to let them go…it’s so hard for a mother to trust her young’uns to anybody else…”¹

Have you ever felt like this? How can we help each other to let go?

¹MoonWomen by Pamela Duncan, Delacorte Press