Living Alone When You Need Support

Typically when I discuss the difficulties in living alone, I’m talking about money. It’s too expensive for the average person to live alone. It’s usually too costly to live with just one roommate. But I’m not talking about financial difficulties today, at least not directly. In this blog, I want to look at why disabled women who have atypical support needs struggle with independent living.

When you need help meeting your needs

Burritos_and_adhd (an AuDHD woman) made a video in which she says that her support needs were better met when she was in abusive relationships with men. Though not advocating for that (she notes that she would not go back to an abusive relationship to have those needs met), she clearly articulates a point that I simply don’t see people talking about. In general, I think people are more aware than we used to be about financial abuse and financial dependence in abusive relationships—though we still have a lot of educating to do on that topic. But when it comes to other basic needs, there’s a disconnect.

As someone with disabilities that can make taking care of myself difficult, I understood her post completely. I have gone back to unhealthy relationships for both financial reasons and for other support needs. Like Burritos and ADHD, my needs were not well met in those situations, but it was marginally better than living on my own. I’m very fortunate now to have a life where I can largely accommodate myself and rely on trusted people for help when I need it. But this way healthy independent living is relatively new for me. And it still isn’t perfect.

Before I talk about how to manage your support needs as a disabled woman, let’s get more specific. What type of needs are we talking about?

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What are moderate and low support needs?

When we’re talking about support and disability, we can think of things in a few broad categories. Low support needs autistic adults are usually (though not always) capable of independent living in as much as they will generally be able to pay bills (not always on time), feed themselves (not always consistently), and manage their own basic hygiene to varying degrees. But even for low-support needs individuals, thriving or maintaining a healthy lifestyle (financially and physically) can be difficult or unattainable.

Often, low support needs adults will simply have to let aspects of their well-being fall to the wayside to keep up with more immediate responsibilities. For instance, an autistic woman may miss or skip meals and may rely on less nutritious options when she does eat. She may have to ignore household cleaning and maintenance. That’s so that she can focus her energy on things like managing her money and holding down a job. Autism manifests differently for everyone, so that’s one example out of thousands.

People with chronic fatigue face very similar challenges. They have to parcel out the energy they have, when they have it, which means that a lot of basic care is going to be left undone. For disabled women with physical limitations, independent living may not be comfortable or sustainable.

A note on social support needs

Social support is multi-faceted. It has different meanings and subtypes. For instance, social support could refer to the need for socialization. As humans, even introverted ones, we require some level of socialization to remain physically and psychologically well. It can also be a human support system that you, as a disabled person, need to navigate the world. For women with autism spectrum disorder, social support could refer to the support needed to manage social interactions.

In Living Independently on the Autism Spectrum, author Lynne Soraya describes initially relying on her friends to identify which people were trustworthy and which were not. After some time, she was able to make her own, largely accurate, observations about people. But she still advises seeking input from others due to associated issues, such as alexithymia.

Sadly, people with physical, mental, and neurological disabilities—people who may have an even greater need for social support—often have to manage with less help from their community. Many people are taught to see disabled people as burdensome and needy, leading them to fear forming those relationships. That in turn can lead disabled women to hide their needs for fear of being neglected or abandoned. So, social needs are often difficult for disabled or chronically ill women to meet, regardless of the specific struggle.

Where support needs impact independent living

In a perfect world, perhaps everyone would be accommodated to the point where independent living was a possibility for anyone who wanted it. But that’s sure not the world we’re living in now. In the United States, where hyper individualism has broken down many communities in just a few generations, disabled people face the cultural belief that anyone who depends on others for help is a “burden.”

Before we go on, we need to consider the fact independent living isn’t always the goal. Many low-support needs women would like to live with someone, but don’t have anyone in their lives who can be a roommate, companion, or partner. In this blog, I’m going to focus on single women who either are living alone or would like to live alone and have their needs met, but it’s important to remember that that isn’t everyone’s ideal.

Making independent living possible

How can you balance getting your needs met with maintaining an independent lifestyle? If you have the means, hiring a part-time caregiver, a house cleaner, or a pet-sitter are great ways to get the help you need. But whether you can afford those accommodations or not, you’re still going to need to…

Find community

You’re probably tired of reading that. Believe me, I understand. For many disabled women, maintaining a social life is particularly difficult. Mobility limitations, low stamina, high anxiety, and the double empathy problem are just a few of the things that severely limit our ability to stay connected. It’s a rotten cycle; disability makes socializing fraught, but socializing is one of the primary ways to find accommodation. On top of that, disabled women are far more likely to face economic uncertainty. And socializing is expensive. You need money for meals, event tickets, gas or cab fare, a nice dish to bring to the potluck, etc.

Your best bet is typically to find local, like-minded people. If the group meets locally, there will be fewer logistical issues, like timing and transportation, to work out. And as to like-mindednes… That won’t just mean having the same hobbies. Finding a club for something you’re already interested in is an ideal place to start, but that’s not the most important factor. You need people who will work to include you. A small group that values similar things will be more likely to work to include you when your support needs run high.

I’ll talk more about specific places to start your search a bit later. For now, though, let’s continue. You’re also going to need to…

Get comfortable asking for help

This can be difficult, especially since many of us have spent years trying not to be a bother. And it may feel counterintuitive when your focus is on independent living. But trying to manage your additional needs on your own will lead to burnout quickly. Plus, asking for help early on will aid you in identifying your ideal friends. The right people will be glad to lend a hand. The wrong people will bail. That simplifies the entire process.

I recommend starting small. Depending on how adverse to asking for help you are, this could be something as simple as asking someone to bring you back something from the store. Most people don’t mind lending a helping hand. Plenty of people actually enjoy being able to offer assistance.

Helping out is usually easy. Asking for help is hard. That’s why it can be difficult to move from a charity mindset to a mutual aid mindset. But if we want to build a better community, we’ve got to learn.

Accept that you might not be able to fully thrive

The ugly truth is that sometimes, solo living will come at a high cost. You’ll need to decide what kind of cost is manageable, and what’s too high.

If your apartment is a mess because all your energy went to performing well at your job, give yourself some grace. I love the solo lifestyle as much as anyone, but we were never meant to handle everything alone.

Where to start finding support?

So where does a disabled woman start looking for this community? If you’re religious, your local church, temple, mosque, fellowship hall or meeting house can be an ideal starting point. Many religious organizations offer small groups and interest-based monthly meetings. If you aren’t religious, you can often find the same type of social support from a local American Humanist Association or non-religious religions, such as the Sunday Assembly or Unitarian Universalists.

If that won’t work, check out your local library. Many branches host interest-based social groups (even those that have nothing to do with reading). Your library may list these organizations online, or you may have to go to the location and look at a bulletin board. Local arts councils, comic book shops, bookshops, and other businesses also tend to offer their space to free-to-join groups like painting societies, gaming leagues, and book clubs, respectively.

And as you go through the process of joining different groups, budget for the energy it will take to pull back from communities that are unhelpful, regroup, and try again. Your people are out there. If you can’t find a local organization, an online group could be your best bet. They may not be able to help you meet your physical needs, but they can offer tremendous emotional support.

Remember that the cost of community is discomfort

As you visit different group searching for the right community, remember that nothing is going to be a perfect fit. Sometimes the more we find like-minded and like-hearted people, the more strongly we see the contrasts. I’ve never felt as ostracized by a group of people I dislike who are excluding me as I have by people who I believed would be accepting.

As an example, I recently sat through a sermon in a fellowship I thought was very inclusive. I had met disabled women, men and nonbinary people there. So I was surprised (and disappointed) when the speaker launched into a declaration about how the disabled (mentioning those with Down syndrome, autism, ADHD, and cerebral palsy, specifically) are here to be our teachers. The tone felt condescending, particularly when they said many people who have been disabled for their entire lives, don’t know that they’re different. So they know nothing but love.

This person had good intentions. I don’t think they meant to be condescending, didn’t mean to “other” disabled people. Or perhaps they thought since they were othering them in a positive way, it would be alright. But I’ve never met a teen or adult with autism. ADHD, cerebral palsy, or Down syndrome who didn’t know they were different, diagnosed or not. I’ve also never met a disabled person who knew nothing but love. Human beings know anger, know abandonment, know grief. That includes disabled humans. Or, as the speaker said, “differently abled.”

They meant well, but suddenly, I was reminded that no group will be fully inclusive, no matter how much they mean to be. You’ll likely run into something similar in your communities. And when that happens, my advice is this: Expect ignorance, and when you find it, consider offering enlightenment.

Should you stay, or should you go?

Not every moment is a teaching moment, and not ever person is open to learning. And it takes some discernment to know when to speak up and when to simply leave. Just remember that ignorance and good intentions often go hand in hand. And if someone has good intentions, they can sometimes be educated out of ignorant beliefs. Ironically, disabled people do, in fact, tend to be teachers of non-disabled people. Not because of our simplistic worldview or knowing nothing but love, but the opposite.

If you’re looking for an entry-level book about the topic to share with your church, book club, or any other facet of your community, A Disability History of the United States, by Kim E. Neilsen, may be a good choice.

On the other hand, if you’re looking for something that goes deeper and gets more personal, I recommend Don’t Call Me Inspirational: A Disabled Feminist Talks Back, by Harilyn Rousso

One last note on independent living withing a community

As I often say, focus on what you can give back. It’s easy to fall into the trap of thinking that you’re a burden when you have higher support needs than typical people. But you aren’t. And one of the best ways you can prove that to yourself is to look at all the ways you provide for your community.

I had a disabled mentor once who said she felt constantly self-conscious about how much help she needed. It surprised me, because while she needed some physical assistance, she gave so much of herself as a teacher. People should be cared for no matter how great their needs are, clearly. But I was surprised that she thought she was taking more than she was giving.

This gets back to the idea of mutual aid rather than charity. We all have a responsibility to take care of one another in whatever ways we can. That means your community has a responsibility to care for you, and you for it.

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What are your experiences? Are you someone who needs support and lives independently or aspires to? If I’ve overlooked something, I hope you’ll mention it in the comments below.