My name is Creigh. I’m a 25-year-old full time grad student, perpetually sleepy and broke. I’m an introvert, a proud nerd, and the kind of person you might find randomly dancing in the aisles of the grocery store.
I’m also my disabled adult sister’s carer.
People are always shocked to find this out. There are two things that they immediately say when they discover this.
First, they make some pitying remark to the effect of how grateful my sister must be to me.
Let me nip that in the bud right now. My sister does not need to be grateful for me treating her like — well — my sister who I love, much less as a human being.
Her needing assistance does not diminish her value in my life one iota.
The next thing they say is “You’re so young! How could you possibly handle such a big task?”
In reality, I’ve found age has very little to do with caregiving abilities. In fact, to give me some respite, we tried hiring a professional carer to come in a few hours a week to help out.
The carer was in her late sixties. If age and experience were enough to make one a good carer, she would have been.
The thing is, she wasn’t. Not at all.
After a couple of months, when I noticed Caley starting to fear the carer coming by, we stopped using her services.
You see, the key to being a good carer has nothing to do with age, or even experience. Instead, it relies on being able to find solutions to complex problems that respect the caregivee, while not burning out the carer.
These are areas where age, or even experience, aren’t enough to guide you to the right answer. Nor was any of my educational background – degrees in communication sciences and disorders and psychology – helpful.
I stumbled along in the dark, just doing whatever felt right (which was like flipping a coin) for about six months. That is, until I realized I had the key I had been searching for all along: Feminism.
Think about it. The same tools that intersectional feminism teaches us to use when interacting with marginalized groups are perfectly made to cover caring for a disabled adult.
Here, I want to share what I’ve learned, and the sign posts from feminism that you can use to guide your own caregiving for a disabled adult.
Because as I’ve seen from watching other carers, listening to disabled adults, and my own experience, we can (and need!) to do much better as carers. And feminism can lead the way.
1. Listen to Your Caregivee and Be Aware of Your Position of Privilege
If I had to stop at one single point on this list, it would be this one.
Feminism teaches us to seek out and tune into the voices of the marginalized. It’s also a principle that you have to actively apply. I believed in this, I preached this – and yet, I still messed up in applying it to my caregiving. A lot.
My wake-up call came when I realized I was forcing my sister to undergo a medical procedure she was emphatically communicating that she didn’t want. As she was lying there in the bed, panicking, repeating over and over again that she did not want to have the colonoscopy, I kept pushing her to stick with it.
I thought I was helping her. But the truth is, I wasn’t.
It wasn’t until the medical staff at the colonoscopy center took one look at her panic-attacking terrified self and said, “I’m sorry, ma’am, but we don’t perform procedures here when the patient is unwilling,” that I realized what a giant screw up I had made.
I should have listened to my sister. The colonoscopy, though a good idea, wasn’t necessary – more a precautionary measure. And yet, in my position of privilege, I was pushing something on her that she, a competent adult, didn’t want.
As carers, we may be in the driver’s seat for many aspects of our caregivee’s life. And if you let that position go to your head, it’s easy to also selectively listen to them and not listen to their self-advocacy.
It’s also wrong.
Be receptive to what the adult you are caring for is communicating.
This is their life, not ours.
2. Take into Account the Desires of the Marginalized Group
Okay, so listening is all well and good when your caregivee can consistently communicate their needs and wants and is cognitively able to consider the situations they’re making decisions about.
But what about someone who can’t clearly communicate, or who has cognitive differences that make it so they may not understand the situation? What then?
I run into this situation fairly frequently, as do many carers.
As a result, I make most decisions for her. That’s a weighty position to be in – and one I take seriously.
My first step, of course, is to try to let her use another method to communicate her desires. Instead of asking her for a decision, I’ll just try to figure out her likes and dislikes and go from there.
With someone who cannot clearly communicate through words or signs, it’s important to look at non-verbal signals.
If, when you drive your caregivee to get a haircut, they start banging their head and seem upset, that’s a pretty darned good sign that they’re saying, “No, I don’t want this.”
What about with something that can’t be skipped, like getting an infected tooth removed at the dentist?
Of course, if the person is capable of cognitively understanding the situation, you still listen to what they want, even if it’s going to end with them feeling bad. That’s what an adult who didn’t need a carer would be doing, and making decisions that aren’t necessarily the best long-term are the right of any adult.
But if your caregivee doesn’t understand the situation, that’s where you use your judgment of what you think they would want if they did – incorporating their verbal or non-verbal signals into your decision.
Ultimately, getting the tooth pulled will help their health and spare them pain, so you’d probably decide they needed to get it pulled.
That’s not a get out of a jail free card, though. We apply this far too often, using it as an excuse to force our will on a person who can, in fact, communicate what they want, if not necessarily in a traditional manner.
Moreover, even if we do have to make an executive decision, that’s no reason to completely ignore a person’s signals. You should be taking their desires into account.
Remember, the executive decision should take into account what the person would want if they understood the situation. That means you may want to do a practice visit to the dentist, incorporate a visual schedule, have laughing gas on hand – whatever you think that your caregivee, not you, would want if they could tell you.
3. Amplify Your Caregivee’s Voice
I’ve messed up with this one. A lot. Because not only is it important to listen, but as carers, it’s important we help other people listen to our caregivees, too.
It’s easy to just think, hey, I understand this situation, I’ll just substitute my voice for my caregivee’s. But, though there are microaggressions absolutely everywhere that encourage us to do this, we have to fight back against that.
For example, the second that the doctors hear that Caley is autistic, they hand me her HIPAA waiver and address themselves to me, despite the fact that she’s sitting right there.
It’s easier to sit back, sign the waiver, talk to the doctor, answer the questions, what have you, instead of pushing back.
But that’s what we should, in fact, be doing – pushing back.
We need to amplify the voices of our caregivees, and help clear the space for them to communicate, instead of overriding them with our own.
4. Recognize When You’ve Made a Mistake, Learn from It, and Improve
A lot of feminism is simply learning from your mistakes.
We all mess up. Maybe you got the terms gender and sexuality mixed up when you were first learning about them. Or perhaps you asked a person of color where they’re “really” from or unintentionally used some ableist slurs.
These are all pretty common slip-ups people make. And you know what? We all make mistakes and that’s okay.
What feminism teaches us is to 1) actively educate ourselves about the issues marginalized groups face so we don’t mess up in the first place, 2) acknowledge our mistakes and listen to feedback about them, and 3) learn from where we slipped up and try to not do it again.
Carers need to do these things, too.
Because even with these sign posts to guide you, like me, you will inevitably make a mistake. It happens. The important thing is doing our best, apologizing when we mess up, and trying not to do it again. That’s all anyone can expect.
Simply by acknowledging your mistakes, you’ll be validating the needs and competence of the person you care for in a way they probably don’t get from the rest of society. Owning up to our mistakes is a feminist principle, therefore, that we need to incorporate into our caregiving.
5. Practice Self-Care
This section is going to be the longest here, because this one is hard. So hard. Because guess what? Carers can be face struggles and even be disabled, too.
That’s certainly been the case for me. I myself have a disabling anxiety disorder. That means that pretty often, I’m battling to care for myself, much less for someone else.
The common refrain I hear in reply to this conundrum is to “put your own oxygen mask on before helping someone else,” the idea being that you can only help someone else if you’ve taken care of yourself first.
But what if your caregivee is in dire need of that oxygen right that second? What then? You can’t just let them go without the help they need. So more often than not, I’ve ended up only partially taking care of myself before I care for my sister.
That worked for about eight months – but it took its toll. I was missing assignments, late for classes, ridiculously low on energy, and generally not taking care of myself.
So, what did I do, and what can other carer in similar situations do?
Well, recently, we’ve made some changes that seem to be helping.
One was a change that Caley herself decided to make: applying for food stamps and disability benefits. That should enable her to afford to take care of herself better financially, which is important considering that both of my parents are retiring and I myself am a broke grad student. Given that the whole being broke thing is pretty stressful, this totally counts towards improving my situation as a carer.
I also recruited a friend/classmate to take Caley out for a couple of hours every week. She is one of a handful of people that Caley can talk to without extreme anxiety.
Why? Well, she naturally appears to adhere to all of the principles on this list. Which is ridiculously awesome, if sadly rare.
This is freeing up some respite and recharge time for me, which is very helpful. You can find respite care resources for yourself here.
Three, I’m getting psychological and psychiatric help for myself. I’ve seen so many carers with underlying difficulties of their own that they haven’t gotten help for, and the crummy thing about that is not only does that make the carer’s life hard, but it ends up hurting the person they’re caring for, too.
It’s so hard to get help when you truly need it, and I of all people understand it, but this site is a great place to start.
It’s not easy to be a carer. And it’s not easy to be the person needing care.
But using the principles of feminism – listening, learning from the marginalized group, amplifying your caregivee’s voice, acknowledging mistakes, and taking care of yourself – you can smooth the path and take a lot of the guesswork out of being an ethical carer.
In short, feminism improves everyone’s lot all around. So why not give it a try?
Creigh Farinas is a Contributing Writer for Everyday Feminism. She’s a graduate student pursuing a Master’s degree in Speech Language Pathology and who already has a B.A. in Psychology and a post-baccalaureate in Communication Sciences and Disorders. Creigh is still learning more every day, and her sister Caley reads, edits, and approves everything that Creigh writes about disabilities. You can see more of Creigh and Caley’s writing at Autism Spectrum Explained.
Caley Farinas is a Contributing Writer for Everyday Feminism. She’s a recent graduate with a Bachelor’s in Public Health who writes about the effect society has on the “disabled.” Caley writes from her experience as an Autistic woman with dysgraphia and anxiety disorders. Because of these disabilities, it is hard for her to write and she gets assistance from her sister Creigh in writing/typing. That said, any words that you see attributed to her are her own, and she edits and approves anything her sister Creigh types. You can see more of Caley and Creigh’s writing on their website Autism Spectrum Explained and their Facebook page.