Life isn't a Fairy Tale (Article on Mentoring)

Wake up, my princess, there is no fairy godmother to turn your wishes into reality. Life is not easy and does not always seem fair, but everybody must deal with the cards they were dealt. There comes a time in all our lives when we must say, “Okay, that happened, now am I going to let it control my life, or am I going to take this issue by the horns and beat it?”

In my life I have mentored many people with cerebral palsy, which also happens to be one of my disabilities. Most recently, I mentored a young woman with cerebral palsy. No doubt Linda's family life could have been better. But it is what it is, and I try to get her to see through to the reality of her situation. We could discuss the WHY’s of her life, and discuss HOW people SHOULD treat each other until the sun freezes over, but it would not solve any of her problems. And, certainly, you cannot force anybody to love you. I am a bit like pop psychologist Phil McGraw, in that I like to cut to the chase, rather than sit on the proverbial psychiatrist’s couch and talk for years about what our family did to mess us up.

Now, let me paint a picture; Imagine being very, very intelligent, imagine being forced to go to a day program where many of the people have educational challenges. Imagine your mind does not get properly nourished. Imagine that the reason you are in the day program is solely because you need help going to the bathroom, and your support agency does not want to go to the trouble of hiring somebody so you can attend college… These are all some of the real issues that Linda was dealing with.

I began by telling her I know many people who have found innovative ways around these issues. I also tell her she absolutely has the right to request additional hours. I tell her if her support agency does not help her, she must go to the next level, to the Regional Center case manager. It took a few months, of repeating, over the phone or in Instant Messaging, over and over again, what steps she needed to take. Sometimes my assistant and I felt like a broken record, but she finally succeeded in getting more hours, and she made the decision to stop going to the day program, so she could attend the local college.

Another issue is where she lives. Currently she lives in a house that sits on a road with no sidewalks. She is completely dependent on either taking her own van, which her attendants drive, or taking paratransit, which is unreliable. Otherwise she is just stuck in that house, like a prisoner. There is no just going for a walk, because it would just be too dangerous to ride her chair on the busy road.

There were other things that were going on. I have tried to show Linda that the situation will be awful if she does not move NOW.  She knows it will be bad, and she knows if she stays there, without making her dreams real, she will die. Her spirit will die, and she will be very bitter, yet she feels responsible for her grandfather. The difficulty is that all section 8 lists in the area have been closed for years, and her support agency apparently didn’t know about EDEN housing, or below market rate housing, or any of that.

Due to my contacts from sitting on the disability commission for six years, I have been able to dig up resources for her. But, it is up to her to follow through on those resources, it’s not like I have a van and can take her to these agencies for assessments.

Another area we always come back to is how unhappy she was with her support agency. Unfortunately, the agency that supports me has a waiting list 30 people long, because it is the best one in the state.  But I happen to know a young man who started his own agency because of his own staffing needs. I have told her about his agency many, many times, and keep telling her to call the guy. For some reason, she hesitates, even though her attendants do not understand why she is so unhappy, and why she wants to go out and meet people and have a social life! They have refused to take her to clubs even though she is 26 years old. So, for many months she has sent me instant messages me about how this one did this, and that one does that. I firmly kept telling her, “Linda, your agency is the cause of most of your aggravation, and your tears, you have every right to fire them, and hire a new agency. You even have a right to change Regional case managers." I don’t know what’s holding her back, I suspect, though, it is fear of the unknown.

I tried to build her self esteem by teaching her some of the principles of rational self-interest. I let her know that it is sad that her sister, whom she practically raised, does not want to spend time with her. I acknowledged that she has a right to feel hurt, but then I said, okay – it looks like you just need to let go, and get out there and make friends with people who do want to be with you.

I told her it is okay to put your needs and desires first; you have every right to take care of yourself. Of course it isn’t right that those of us with disabilities have to fight so hard for what seems so basic a right; the right to pursue our dreams. But after acknowledging that life is hard, and reminding her that nobody promised us a garden of roses, I always push her to continue setting goals for herself. One step at a time, one day at a time, one week at a time, goal setting and strategy continue to be key.

I began by telling her she needs to speak up, and make her wishes known. With each obstacle she encountered, I told her to keep going. I tell her she must continue to speak up, and be forceful in obtaining her dreams. I listen with compassion, but sometimes firm, tough love is needed. She has a tendency to get stuck like a broken record, and ask; “BUT, WHY?” this or that happens. It is at these points I tried to push her beyond the WHY, toward the steps she needs to take to obtain services, or whatever she wants to attain.

I got frustrated with her at times, because she complains about things, but then does not follow up on suggestions I give her. I was talking about it with my assistant, and I said, "You know, I can only do so much, it's not like a fairy tale, I can't just wave a wand and make her problems go away. I'm not her fairy godmother; she has to do some of the work.

We must all do as much as we can do. Maybe what we need to do is become our own superheroes, our own fairy godmother. Just like Glinda told Dorothy in the Wizard of Oz, she always had the power within her all along, to go back home. Back in the 70's there was a song called Tin Man, and ever so often I hear a stanza in my head;