Infantalization of people with disabilities…infantalization of ME

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I have a friend in the real world.  I have known her for many years, I met her when the kids started school. Her son and my son became friends, and she and I remained friends.

She has let me down many times.  She has a habit of offering help, then bailing at the last minute. So I don’t rely on her.  She never grasps the importance of the help I need, and I think that is rooted very deeply in her inability to see me as I am now, and her desperate need to see me as I was…able bodied.

To her, I will forever be the person who jogged around the suburb daily, often pushing a double pram with two kids inside.  Before we met, she knew me ‘as that fit mum’,  as did many people.  THAT is who she wants me to be.

I haven’t been her, or anything like her, for almost 13 years.  But people are more comfortable with the fit, healthy person, so they continue to see me that way.

Until something happens that forces them to acknowledge the truth and actually ‘see’ me.  And those events tend to be very uncomfortable…for them, and because they are uncomfortable, for me as well.

Yesterday she came over for a glass of wine. She’s looking for a house, it’s a long story, but she’s under considerable stress.  In a nutshell, she has sold her house and has three weeks to find somewhere else to live. But there is nothing suitable on the market, and she has three teenage kids to house.

She did exactly the same thing two years ago.  She would up having to stay with her ex-husband for three months, and I took her dog for three months, and it was a very difficult situation for her, and her kids.  And now, here she is again.  Same thing.

We talked at length.  She brought wine. I asked her to buy me an extra bottle, because I was out.  And I wasn’t able to get myself to the shop, and I knew I would want more wine in the evening.

Wine is a crutch for me.  Its not the healthiest habit perhaps, but I need something to help me cope.

So she brought the wine, we talked a lot about her situation.  And I, as I always do, made her feel better about her situation. I didn’t tell her she was an idiot for putting herself in this situation (again).  I didn’t lay blame.  I focussed on possible solutions, examining options, because what help is it going through what she SHOULD have done? It’s too late for that now, and its entirely unhelpful.  It would only serve to make her feel bad, and she feels bad enough already.

I’ve had many people treat me this way…when something goes wrong instead of trying to empathise, offer support, look for solutions, they try to find a way to blame me for it.  I really hate it.

Eg. It was my fault that I was left to recover alone from almost bleeding out because I should have known better than to trust my friends. I should have known they would let me down. Helpful, right?

It was also my fault my soundbar and other gear got stolen. What was I thinking moving things into the house before I was sleeping here?

I should have arranged contents insurance before moving anything.  My own fault.

It goes on and on, some people will always try to find ways to blame the victim. It’s truly an unpleasant trait.

Rarely is it my fault, sometimes it’s just bad luck. That’s a thing you know…luck.  And for people to try and ascribe blame is just pure nastiness.  A weak and cold way to make themselves feel better (they would never do anything so silly, right?).  Its just scoring easy points, its immature and its unkind.

I don’t do it. Not ever.

When she arrived, I was managing on crutches, but as time went on, I deteriorated.  When I needed to go to the toilet, I transferred to the wheelchair.  She couldn’t hide the shock on her face.  Or her incredible discomfort.  Does she think I have the wheelchair just sitting around as an ornament?  Its was like it never occurred to her that I actually need to USE it.

She had never seen me use it before, and it shocked her. I think it was one of those moments when my disability was impossible to ignore, impossible to gloss over and pretend it wasn’t happening.  I noted her reaction, and actually sort of hoped maybe she would start to understand that this is what life is like for me.  Maybe learn.

She has made many remarks about the state of my house. I was getting close to getting everything sorted out, close to getting the car in the garage, almost a place for everything, almost everything in its place, but then I lost the feeling in my left leg. And the pain is pretty freaking awful. Even if I could move the leg normally, the pain would stop me from getting more done. So it’s been many weeks, and my house is still chaos.  She finds this very uncomfortable, because she’s a neat freak. And she can’t quite help but mention it, even though she ‘knows’ that I haven’t been physically able to get things organised.  She just can’t help herself.

There’s just a disconnect between what she knows is true (I am physically disabled and not able to perform these task) and what she needs to believe (I am fine.  I just need to work a bit harder, try more.)

I think she needs to believe I am fine, because if this can happen to me, it can happen to her. And that idea is pretty terrifying.  But that’s a whole other blog post.

Bottom line, people are very, very uncomfortable with disability.    I figured over time she, and everyone else, would just get used to it. I’ve had to, my kids have had to.  It would be nice if people didn’t make a big deal, if people remembered that I have a lot of feelings around this, and my feelings are actually MORE important than theirs, and maybe they should consider my feelings before they react.  But that’s a big ask.

One my way back from the toilet, in the wheelchair, I grabbed the bottle of wine from the kitchen bench. I rested it on my lap, as you do, and brought it back to the lounge room.   And as I moved the chair closer to the couch, it slipped.  And smashed on the tiled floor.

A whole bottle of wine, everywhere. I almost cried, but I held it together.

My friend had gone to the toilet and she called out and came rushing back. I said “I need your help.” And I was clearly upset, clearly close to tears.

And she yelled at me.

“Why the eff did you grab the wine? I would have gotten it for you!  Couldn’t you just have waited?”

She went off.

“What the EFF were you thinking?  You didn’t need to do that, I would have done it!”

I was close to tears and she decided to yell at me as if I were some naughty, stupid child.

How dare I decide to do something for myself, something I do daily.  It was just bad luck. I only have 20% function in my right hand and 10% in my left.  I drop things often.  I just wasn’t focused enough, and disaster happened.  I do know better, I do know I have to concentrate when I’m holding heavy objects (a bottle of wine IS heavy to me).  But I need to do things for myself.

But did I need her to yell at me right then?  Not so much.

Accidents happen. A moment of inattention.  It happens to everyone.  Abled or no.

But she treated me like a child.  Had I been able bodied, walking back to the couch and dropped the bottle, she would never have treated me like a stupid, willful imp. In my OWN HOME.

Her first reaction was to treat me like a child.  She infantalized me.  It was her first, and instintive reaction. She was angry at my stupidity. She treated me exactly the same way she treats her children when they do something dumb, I’ve seen that on many occasions.

She treated me as lessor. Lower. Incompetent.  A pain in her ass.

The equity in our relationship shifted at that moment, and now I know how she sees the imbalance.  We are no longer equals in her eyes.  I am something less, that she needs to help and look after, and that it frustrating and annoying to her.  She’s got enough on her plate and she doesn’t need the extra drain of a friend who can’t even manage to carry a bottle of wine.

HER perception of disability is black and white, all or nothing.  She got a sudden shock at the degree my disability has reached, and for her, I’m no longer a fully-fledged person.   I’m a dead weight that she doesn’t’ really want to carry.  I’m like a child.

I should not have tried to carry a full bottle of wine.  I am incapable of that. See what happened? I should have known better.  I should wait for an adult to help me.  A proper person. A capable person.

THAT was what came out in her behaviour, in her tone, in her actions.

She cleaned up the mess (no way would she let the naughty child help). She asked me where the towels were, and in my upset and distress I couldn’t remember where they were. She was going to start on about that, and then I think she realised what she was doing.

At no time did she see that I was holding back tears.  At no time did she seem to feel bad for me, did she think about how I felt about it all.  I’ve had a heck of a week…I have lost feeling and function in my left leg, and I’ve been told by a surgeon that it might not come back. That’s pretty life changing.  I’m in a lot of pain, more than usual.  I need surgery, which is my absolute worst nightmare.

It has been a hell week.

Capped off by being yelled at and infantalized.

She cleaned up the mess, and left shortly thereafter.

Leaving our relationship, or the hierarchy in our relationship, forever changed.  The power balance.  We are no longer equals, subconsciously she sees me as inferior, damaged, needy, demanding, hard work.

I am lessor.  I am something she needs to take care of. I am a child. I am a pest when I try to do things for myself.  And she wants me to just stop trying, because its easier for her, and other abled people, to just do it for me than deal with the extra time it takes for me to do something, and the potential mess if I have an accident.

She would rather do everything for me, thereby not having to confront the truth – I am disabled.  Quite disabled.  Its not invisible anymore, it can’t be ignored any more.

And clearly, she can’t see me as the same person on the inside, when my outward appearance has changed so radically. When I’m sitting in a wheelchair.  I am someone else to her now, and it’s easier to infantalize me and scold me like a child than confront her own biases and fears.  And I’m quite sure, it will be easier for her to stop spending time with me, than to confront her biases and feelings around disability.

One moment of inattention from me, one moment of her not guarding her reactions, and now I know how she feels. She demonstrated fully, as have others before her.

And this is why its just easier to be alone.

4 COMMENTS

  1. I’m so sorry. I hate to say that I know exactly how that feels. I too have lost most of the people I was close to “before” they couldn’t stand or understand or deal with the person they saw in a wheelchair. I’m using a rollator most days presently but still those people are gone. Most of the friends I have now I’ve met since my illness started and most I wouldn’t ask for things unless it was an emergency. I am like you afraid to rely on anyone. Somehow I’ve been treated better by random Lyft drivers then individuals who are supposed to be friends. When I turn my neck I get dizzy to the point of passing out so I have to rely on a combo of paid drivers and trains to get to doctors mostly. No one ever gets invited to my home because I used to be a neat freak (still am inside) but physically have trouble carrying a cup of tea without dropping it so I feel your frustration. People don’t understand what a loss that is and the grieving that goes with it. Virtual hugs.

    • They truly do not, Lynn. I’m sorry that you’re in the same boat, I’m sorry that it is SO common that friends choose to keep their distance, be cold and choose to not understand. You’re so right about random strangers showing more kindness than ‘friends’! What is that about??? I hope there are some people close to you who give you support. Take care.

  2. I am so sorry this person can’t be a good friend to you. Let her go. She will not ever understand unless it happens to her or her child. Your feelings are valid, your situation is valid, your disease is valid. YOU ARE VALID. I hope you will find people who are compassionate and willing to help when you require it. That’s just basic friendship. Sadly, this person has no idea what being a friend means. That’s all on her, not you. Please don’t blame yourself for anyone being unwilling (NOT unable, huge difference there) to help you, encourage you, sympathize and empathize with you. There’s an online community here that will welcome you with open arms. I’ll keep you in my thoughts. I understand. Take care.

    • Thank you Ashley, for your kind words. Compassion and understanding are the hardest things to find. My friend came back the next day..I need to update this post. She brought a replacement bottle of wine and I felt that she wanted to apologise or made amends…but she couldn’t quite bring herself to do it. Instead we had a glass of wine and made small talk, and I know she felt that was enough, all is well. But its not. And its not that I don’t want to forgive her, its just that our friendship has shifted…the change is obvious and it can’t change back again. She doesn’t see me as an equal anymore, and the truth is I respect her far less now! Thanks for being here 🙂

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