By Umi Molter (they/them), Gold Nugget Zine creator, @g0lden_nugget
As a social worker, I see on a daily basis how people are failed by institutions that are (supposedly) created to support them, and it is heartbreaking to see people fall through the cracks. There is something that I have noticed though: People who have stronger support communities end up having a better quality of life and are more likely to bounce back from hardships. For those of us who struggle with executive function, the hoops we have to jump through while trying to get our needs met by institutions often make it so that they’re truly inaccessible, and that’s where our communities can jump in.
Do you know anyone who lives with any of these conditions? ADHD, Chronic Pain/Fatigue, Alzheimer’s/Dementia, Complex Grief, Anxiety, Connective Tissue Disorders, Autism, Depression, Behavioral Disorders, Eating Disorders, Bipolar Disorder, Epilepsy, BPD or Fibromyalgia?
If you do, chances are, you or someone in your closest circle or larger community struggles with Executive “Dysfunction.” It is commonly referred to as having a difficulty with one or more of the executive functions which are either cognitive, behavioral or emotional. And it’s actually much more common than one might think. According to learning and language specialist Craig Selinger, these are the 10 different types of Executive Function commonly referenced: Emotional control, Task initiation, Planning and prioritizing, Sustained attention, Response inhibition, Organization, Time management, Flexibility & Adaptation, Metacognition and Goal-directed persistence.
Having a hard time with any of these different functions may create barriers for us to access services that we need for our biological, psychological or social health and wellbeing. For example, if we have trouble with starting tasks, creating that telehealth account may never happen and we might never get the appointment we need to address a health problem we’re having, leaving our health needs unmet.
We all need support sometimes. One day you may be in the supporting role, and other days, you may be in the receiving role. We need each other. And that is okay! You can use these tips to get some ideas flowing on how to support your people, or you can send this article to your community to give them ideas on how to collaborate with you in getting your needs met…
1. Open up the communication
Sometimes it’s hard to ask for help. lf you perceive that someone in your community’s needs are going unmet, you could mention that to them and ask how they’re really doing. You could ask about different types of needs, like those regarding physical health, mental health, employment difficulties, challenging bureaucratic processes like applying for ID’s, legal status in the country, financial aid, disability evaluations, etc.
2. Ask for consent to support
If the person decided to open up and talk about certain needs that are going unmet, and you personally (or collectively, if you have others willing to collaborate, which is the more ideal situation) feel that you have the capacity in your life right now to advocate for them, ask them for their consent to support them. Be as specific as possible. You could ask, “Can I research some services that address to these kinds of things in our area on your behalf?” If the person says yes, let them know that you’ll get back to them and touch base with what options you found.
3. Research local services
Look up local services that address those kind of needs, and also inform yourself on the legal rights your friend might have. Make sure to read through local laws and check out what kind of services the public institutions offer for these kind of problems as well. Make a list of different services that they would be eligible for and make a detailed list of all the requirements, documents, copies and forms that would need to be presented in order to access the service. Maintain privacy by not divulging any information they didn’t explicitly give you their consent to share.
4. Support with paperwork
Ask if the person wants or needs help with getting the required documentation together. This can take time and some planning, especially if they have to apply for certain documents that they don’t already have, such as getting a government ID, birth certificate, social security number or medical documents. If you’re supporting your friend through teamwork, the team could split up these tasks to make it lighter for everyone, always with the explicit, enthusiastic consent of the person that you’re advocating for.
5. Make phone calls or use online portals
For some people, making phone calls might be impossible or cause distress, overwhelm or confusion. If this is the case, they can consent to you making necessary phone calls on their behalf, either in their presence or privately. You could also offer to be present while they make phone calls in case they get overwhelmed or anxious, for example. Some people may also have difficulty using online platforms, so you could also offer to create the required logins to book appointments, always with their consent. Make sure you write down their logins, passwords and any other important information like doctor or social worker names and phone numbers, appointment times, etc.
6. Support through organization
Ask if they would like support with organizing their documents, medicines and general paperwork. You could get a folder and organize the documents by service provided or by topic, such as “health”, “work”, “disability”, “legal status”, etc. One of my partners has an ADHD diagnosis and this is usually the hardest part for them, so when they go to their appointments, they just stick all the papers they’re given in the folder and later we go through it together and write To Do’s on a whiteboard. It has actually turned into a nice moment of connection for us. <3
7. Offer to accompany them
You can offer to accompany them to appointments. They can decide if they want you to just go with them and drop them off, wait for them in the waiting area, or go in with them to their appointment (when allowed). I have chronic stomach issues and my partners always alternate taking me to appointments, and honestly even when they’re only allowed to wait in the waiting room with me, I feel so supported knowing I have someone to hold hands with before and after, and to be there for me if something upsetting happened in the appointment.
8. Provide non-judgmental emotional support
For some of us, even thinking about these processes can be overwhelming, exhausting and disabling. It’s important to be aware of this whether or not the tasks at hand seem “hard” to us personally. Offering a non-judgmental ear without trying to fix everything for the other person or change their mind about how good or bad the process is going can make a world of a difference.
9. Be mindful to acknowledge agency
Do not assume that someone can’t do something. If in doubt, ask directly if they would like support. Practicing explicit, verbal consent is one of the most important ways that we can acknowledge someone’s agency amidst these often dehumanizing processes. Ask them how they want to be supported, and then listen and respect their boundaries. Try not to question their capability when they tell you that they want to do something you know they’re struggling with on their own. If it doesn’t work, be there to help them get back on the horse. Our role is to support, not to be anyone’s superhero. For many of us, receiving help is incredibly difficult as it is. Don’t underestimate the power of the person in question having the last word regarding their processes — this can be what restores justice to people who have been disabled by an inaccessible system.
10. Remind ourselves of the horizontality
Remind yourself that although you are supporting the person in question with certain aspects of their process that are difficult for them, this does not grant you any type of power over them whatsoever. The support being offered should always be horizontal. Any type of power dynamic needs to be absolutely avoided in order for the dignity of everyone to be preserved. Let’s check ourselves!
11. Deconstruct social hierarchies
While reading this article, who have you thought about when I’ve talked about your “community”? In heteronormative, nuclear family-based societies, we often have certain social hierarchies ingrained in us. This kind of society tells us that our immediate, blood family comes first and before anyone else, then behind them comes our spouse or romantic/sexual partner, then friends, then maybe — maybe, the people we see everyday at work or school, completely forgetting about our neighbors and more distant community members! I encourage you to de-hierarchize and diversify your care giving and receiving network. Providing or receiving the kind of support listed in this article doesn’t only have to be directed towards your family and potential romantic/sexual partner(s). You can include your friends in this self-made care giving and receiving network. You can include other people you see on a daily, weekly or monthly basis. You can include long-distance friends. You can include past lovers that you hold a healthy, caring relationship with. You can include coworkers, neighbors, and the people who caregive to people important to you. You can include so many people here, and the more we include in our care-giving and receiving networks, the stronger, more diverse and resilient our community becomes.
12. Respect your capacity
Acknowledging that you may have “more” executive function than some of your community members at a specific time or for a specific task doesn’t mean that you have an unlimited capacity to advocate for them. We are not and can not be superheroes, that’s simply not realistic, nor sustainable, nor healthy. Remember to rest and fill your own cup by advocating for your own needs and asking for support from your community members when you need it. Don’t make yourself a martyr to the cause. Rest.
13. Call upon community
When your cup is empty or you’re out of energy, call upon your community, with the enthusiastic consent of the person you’ve been helping. These systems are sometimes so fucked up, complex and coercive that we literally can’t do these things alone. We build community when we allow ourselves to be aided by it. We build community when we freely and proactively offer our support to it.
The art of enthusiastically giving support
and openly allowing ourselves to receive it
is the primordial Heartbeat of Community.
Umi (they/them) can be reached at
you.me.molter@gmail.com or on Instagram at @g0lden_nugget.