Tuesday, April 17, 2012

He Ain't Heavy ...

I am going to be cryptic.

I think respecting privacy is an important part of being a respectful person.

I received an email from a reader about an email that she had received. Someone had written her who had become separated from his brother with an intellectual disability and who now wanted to try to reestablish a relationship. He asked her for advice. She asked me. I asked them both if I could answer that question here. They agreed.

It's important to note, however, that I've answered this question before. Most often from parents who lost touch with their children during the dark years of institutionalization. The question was always full of guilt and concern and heartache. The question was always asked with fear - fear of judgement for decisions made in the past. The question always touched me. I think that the opening of a heart is as beautiful as the closing of a heart is terrifying.

(Note to the fellow asking the question ... if this all looks daunting ...skip down to the summary below.)

These are my recommendations and I encourage you all to join in - remembering to be gentle and encouraging, even while being honest:

1) Examine Motives: It's important to know why you want to reestablish this relationship. If the relationship is being established to assuage guilt, if it's mostly for what YOU need, then be very careful. Remember, the door is closed. Your brother is used to the closed door. Opening that door, without every intention of keeping it open, is cruel. Try to move your motivation (believe it or not that is possible) over to what you will both gain. You will both gain a relationship, you will both experience brotherhood, you will both support each other. Wanting a RELATIONSHIP is different from wanting FORGIVENESS. Don't confuse the two.

2) Expect a Person: This may sound odd, so let me explain. Your brother is now a stranger to you, it might be tempting to imagine him through the lens of stereotype: 'They are just so loving.' Go in knowing that your brother is a full bodied, flesh and blood person, with likes and dislikes, with passions, with interests, with a way of doing things that is uniquely his own. This is actually good news. I couldn't imagine how boring it would be to be with someone perpetually nice. How horrible! So be prepared to spend time getting to know him - explore those interests you find in common. It may take time, but then, all relationships take time. Sharing a bloodline doesn't hold a candle to simply sharing time.

3) Staff are Staff: If your brother has support staff - don't confuse a relationship with them with a relationship with your brother. Unfortunately we 'helping people' can tend to take over in situations like this. You will need to politely, but firmly, push us aside. It's your brother that matters here. Calling and chatting with a staff about how he's doing IS NOT THE SAME as calling him. He's your family ensure they know that. If he takes some time in answering questions or explaining himself, give him that time. It may be easier to ask the staff, but really - isn't time what you want to spend. If you are going to ask them something - ask him if that's OK first. Make sure he knows you respect him enough to let him make those decisions.

4) Staff are People: Because of that be careful. People can be judgemental. Some may wonder about your motives. Some may feel that you are a 'Johnny Come Lately'. Some may actually fear you because they fear losing power. So if you feel a resentment from the staff - well, don't let that bother you - you've made a decision to reconnect with your brother.

5) Connect The Way People Connect: Time together doing stuff that's fun for both is the simplest way to establish a relationship. Discovering each other, discovering what makes each other laugh ... doing with and being with is the easiest way for people to become family. Giving stuff is easier - and we are all tempted towards 'easy' ... but giving time is what's needed here.

Now the tough stuff:

6) Your Brother Has Rights: In all my time in working with people with disabilities I have seen many families reunite. It's wonderful. It's heartwarming. It's lovely. Many people with disabilities that I have known have fully welcomed and embraced the contact when it's reestablished. Many people with disabilities brushed away apologies and simply wanted to get on with being ... a son, a brother, a sister, an uncle, a cousin ... From my experience, the odds are in your favour. But that's not always true. Some people with disabilities after a time apart or a time away are not interested in reestablishing a relationship. Some fear hurt again. Some are wary of intentions. If this is the case, remember, you can't force relationship on someone. Go in hoping but be prepared to listen. This relationship is as much his choice as it is yours.

7) Apologize At The Right Time: If you feel that you need to apologize - do. But choose the time. On first meeting - it should be about joy and the pleasure of seeing each other after a long time. Burdening the first contact with the weight of the past may relieve things for you but may cause your brother to re-live stuff that can get in the way of the relationship. Choose the time. You will know when that time is. It can be, no matter what I just said, on reconnecting. It can be months later. You will know. Have you heard the expression, 'I need to give him an apology?' Apologies aren't giving, they are taking. The only apology worth anything, is change. It may be best to apologize in action before apologizing in words.

In brief.

Go. See. Your. Brother.

14 comments:

Anonymous said...

Wow - wonderfully put. I love the part about motives - easing guilt is not the best of motives. Good advise for ANY relationship restoration. Thank you Dave.

TMc said...

Amazingly powerful but then again truth often is.
As professionals (PLODs), we need to suspend our judgements and realize that family members were also victims of society's prejuidice.

Tamara said...

That was very powerful. Here in Illinois, the governor has mandated the closing of more institutions. I wish all the families could read this.

Tamara said...

That was very powerful. Here in Illinois, the governor has mandated the closing of more institutions. I wish all the families could read this.

Jeff said...

Thanks for writing this! It was very thoughtful and thought-provoking. I'm sure it will be useful to many families.

Rachel Douglas said...

Love your words and so happy people come to you for advice.

Belly (Liz McLennan) said...

This is so wise, Dave. Not only for people with disabilities, but for anyone seeking their roots, family, time.

I was adopted and sought my bio-mother in my late teens, bio-father in my late twenties. Blessedly, both reunions went well and I have a warm and very close relationship with my bio-mother.

How I wish my bio-father had read this piece before responding when I reached out to him...

Amanda said...

I have one thing to add that may never come up, but it's come up for me often as a person with a developmental disability who has interacted with a lot of parents and siblings of people with developmental disabilities.

If for some reason you come into contact with disabled people besides your brother, and build any sort of relationship with them. Do not come to us looking for forgiveness. Do not come to us looking for absolution. It's not ours to give. And it can become extremely uncomfortable for us. As in, it can feel like I'm being manipulated by someone who wants something from me and doesn't like the only answers I'm able to give them. I've had people become enraged -- like scary, violently, enraged -- when I've told them that forgiveness and absolution is not mine to give, that they'll have to look for it from whoever they think they have harmed, or from God if they believe in any, but not from other disabled people. It's a heavy burden to place on us and if we don't know how to refuse outright, we can end up saying things we don't mean just because we know it's expected and there's often immense pressure on us to say what the person wants to hear.

The stuff about pressure is probably true about your brother as well, but at least forgiveness is something he can give you. I can't. No other disabled person can. Please don't put that burden on us.

Anonymous said...

I am a little confused by Amanda's comments. I certainly understand not putting pressure on anyone to do anything that is beyond their personal boundaries or abilities - but forgiveness? Personally I view forgiveness as a gift. People bear way too much guilt - and often for things that they had no control over. Forgiveness is healthy. Can you explain how it is a burden? Your point of view is valued. Thank you.

Cynthia F. said...

Really thoughtful.

Cynthia F. said...

Anonymous, I think Amanda means that disabled people are not monolithic. They don't represent each other, only themselves. If someone wants forgiveness for having behaved badly toward a specific disabled person, only the person they have actually wronged can forgive them. Other disabled people can't forgive those specific acts on that person's behalf, just like I could not forgive you for hurting your mother (had you done so), even though I am also a mother. Only your own mother could do that. Of course, I could like you and accept you even knowing you had done something bad to someone at some point - particularly if you felt and expressed remorse about having been bad.

Cynthia F. said...

Anonymous, I think Amanda means that disabled people are not monolithic. They don't represent each other, only themselves. If someone wants forgiveness for having behaved badly toward a specific disabled person, only the person they have actually wronged can forgive them. Other disabled people can't forgive those specific acts on that person's behalf, just like I could not forgive you for hurting your mother (had you done so), even though I am also a mother. Only your own mother could do that. Of course, I could like you and accept you even knowing you had done something bad to someone at some point - particularly if you felt and expressed remorse about having been bad.

Cynthia F. said...

Just to clarify, my "really thoughtful" comment was directed at Dave. Although I love reading all the comments on this blog, they definitely get me thinking and I love when people share their own stories and experiences.

Now I'll stop hogging this space!

Anonymous said...

Thanks Cynthia for your response. And don't worry - your "really thoughtful" comment was obviously directed to Dave. Mine was just confusion...ha ha.