TOAA Reflections: What it Means to be Part of a Support Network

by Melissa K. Vassar-Belloso

TOAA Reflections

What it Means to be Part of a Support Network
By Melissa K. Vassar-Belloso

In a continuation of considering recent events in my life, I’ve been trying to make an effort to try to understand some of the viewpoints of the people around me. My mother recently told me that my recent tough spots were toxic to her and she no longer had the energy to try getting through to me. But I wanted to try to think of it objectively despite most people not giving me that benefit when they judge me. Being on the autism spectrum sometimes means I can take things literally so when people use things like vague language or slang it’s about as good as using a foreign language I don’t know a word of and it’s apparently somewhat beyond a neurotypical person in most cases to speak directly or understand my need for this. It’s one of the things people consider “mean” if I ask for direct communication so what I often have to do is make a note and try to translate what they’re saying later to the best of my ability. As you can imagine, this process is mostly hit or miss.

I’ve written before about how I feel about the term “toxic”. While there are indeed toxic people in our lives, we often apply the word to justify more selfish reasoning. The majority of times I see people using the term toxic it’s so they can justify not taking personal responsibility, so when I hear it used I have to put it into context before I can decide what the person is trying to say by using it. In my mother’s case I think she’s usually a well-meaning person and she often misuses offensive modern terminology without knowing the application so it’s most likely she doesn’t realize how often she comes off as offensive. She loves using all caps which I perceive as yelling but she’s using it as a way to emphasize without realizing she’s yelling and she casually uses modern terms without realizing how negative they are. I assume her use of the term toxic falls into that category in this case and I can’t hold ignorance against a well-meaning person.

Unfortunately, pointing out these kinds of things to people often makes me the villain so it becomes a lot easier to just sit back and take it. It’s going to break me down inside because I have no choice but to internalize, but I live in a world that turns me into a villain when I ask for basic respect and consideration any human being would deserve. It’s unfortunate the biases we have toward those with disabilities often seeps into our homes without us realizing it, but I think the issue isn’t to fret but to educate people. If you’ve followed my earlier blogs you’ll remember when I discussed how rampant psychological abuse toward the disabled can be and how often the culprits can unintentionally be family.

But an interesting thing she said is that she “thought they were doing the right things” and that piqued my interest. Is there perhaps room for education on the process of supporting a disabled person that our mental healthcare systems are missing? How many well-meaning relatives are struggling because they genuinely have no idea how to properly support a disabled loved one?

What it also made me think about is another topic I’ve discussed in the past and that’s the gap in adult care when it comes to mental health. What if the gap exists outside of healthcare? What if the mistaken belief disabled adults need less support is universal? If it is then it explains the very gap my relationship with my parents is falling into now. In fact it explains how many disabled adults feel a sense of being essentially abandoned in their times of need as adults and the sort of unknown tension that forms between disabled adults and their parents as both parties get older. I think our society has a crucial gap in understanding what is actually needed in terms of support for disabled adults and the dead air of no one discussing this possibility is creating a wedge in personal support networks when disabled parties reach adulthood.

Let’s start by talking about some basic myths that need busted on this topic

Adulthood doesn’t give you an excuse to stop supporting me.

One of the biggest myths I’ve tried to dispel in past blogs is that disabilities don’t vanish. I was a disabled child and I grew into a disabled adult. My disability hasn’t changed. My disability isn’t going anywhere. My disability hasn’t lessened through the sheer virtue of me becoming an adult. Disabled adults still need the same amount of love and care as a disabled child or disabled teen. Me becoming an adult doesn’t mean I’m suddenly more capable or less in need of care and support. I hate to burden your non-disabled universe with this reality, but I still need help. Adulthood doesn’t cure or lessen disability and it doesn’t give you an excuse to treat me worse or differently. It doesn’t give you a free pass to put me on a shelf and take a backseat to supporting me. If you feel that it does, you’re doing it wrong.

The fact of the matter is that if you feel you are tired of dealing with your disabled loved one, feel they are “toxic” or don’t have the energy anymore that you are basically communicating to them that you find them to be a burden and have stopped loving them. Mental illness creates it’s own binoculars and translation guide so you are basically telling them that you no longer wish to support them. That may not be your intention but it will probably be the actual impact. I’m on the autism spectrum so if you tell me that my words and thoughts are toxic or aren’t worth your time, I translate that as me no longer being worth your time.  Furthermore, if you can choose you over me that readily, it makes me question how much you were in my corner in the first place and that plays on the trust issues being disabled tends to build into a person over time. If you want to commit to supporting a disabled loved one than realize it will be difficult and it will not just lessen or end when they become an adult. They will still need and you and will in fact need you more due to the lack of resources available to disabled adults.

Support means good and bad.

It’s fine and dandy if you want to be around to celebrate with me or you feel a need to champion for me when I’m having successes but disability has two sides. Disabled people are not always going to be making milestones. They will relapse, struggle and hit bumps. Supporting them means being there for all of that. Life is not a picnic. If you can’t see yourself standing by the person at their worst then you aren’t ready to be part of their support network. Our society is always ready to talk about charities and disabled people doing well, but we also need to realize disability brings hardship with it and lessens a person’s quality of life. We can’t pick and choose what parts of disabled life we support anymore than the person themselves can choose to be disabled.

If you find yourself backing off when a disabled person is actively dealing with their disability then it’s not true support. Support is 100% even when the disabled person is not at 100%. That may mean you feel uncomfortable, stressed or fearful but if you truly love that person and want to support them, you’ll see the person underneath that layer of what their disability creates in them and stay true. When I compare some of my immediate family to my husband or my other true supporters I notice that my family steps down when I’m acting like a disabled person but my husband will sit and look me in the eye as if I’m the same exact person before, during and after a meltdown. He’s seeing me and not my disability. He loves me and realizes that  loving a person is sometimes painful or difficult. Relationships can’t just always be sunshine and rainbows. This is especially true when living with disability. As I’ve said before, you have to shovel some shit to grow a garden and if you aren’t willing to do that then you aren’t ready to support someone with a disability.

You don’t need to remind me how much of a burden I am.

Society reminds me every single day and that’s why having family support matters so much to a disabled person’s quality of life. I have self-esteem issues woven into every fiber of my being by default so I don’t need you to remind me about what a burden on society I am by pushing that at home. When you only choose to talk about how much you do, how much you struggle and how much of a victim you are, the disabled person taking that in will internalize every word and add it to a growing collection of reasons for why they hate themselves and the chore of waking up in the morning. If you are saying you want to take on the task of supporting a disabled person then do that but remember that doing that requires being strong and not being a martyr when you can’t deal with it. If the first place you go to when the person is struggling with their disability is to talk about you then it’s time to clam up and reevaluate how willing you are to support them. When we “help” others but focus on us, we aren’t truly invested in helping that person and the mature thing is to realize that and not do more damage to the person to make ourselves feel better and “heard”.

I can’t control most of what I do. What’s your excuse?

While there is a sense that even a disabled person is capable of being manipulative or wrong in a situation, I think we have a society that somehow holds a disabled person to less forgiving standards. I hear very often from family how they never get to express themselves and how they hold back around me. Well, guess what? I didn’t ask you to treat me differently and I didn’t ask you to develop roundabout methods of interacting with me. Don’t blame me for a system you imposed on yourself because you felt you had to on my behalf. When I point out that people don’t have to tiptoe around me and I just want to be treated like a person, I really mean I want to be respected. Wouldn’t you want to be respected? How would you feel if I assumed you were dumber and spoke down to you or bottled things up and essentially lied because I decided based on a societal myth you had no empathy. How would you feel if I “walked on eggshells” around you because I thought so little of your mental capacity that I assumed you couldn’t handle full interaction? It hurts and it hurts a lot. But when people do these seemingly great favors for me and they backfire, I get yelled at and blamed for something the person took upon themselves to create.

People very often treat me like a diagnosis instead of treating me like a human and the fact of the matter is that you need to see I’m a person under that label. My disabilities are part of me but they aren’t what makes me who I am. I am a human being just as much as anyone else and while I have impairments that impact how I interact with others, you’re supposed to be the healthy one in the relationship. I’m not being mean. I have a flat affect and a monotone but you have the tools to understand proper social interaction. If that’s a fact then why are you the one who is actually being mean and disrespectful. I can’t rewire my brain but as a neurotypical person you have the advantage that you should have more insight into how to treat others. It’s not an excuse. It’s a fact. Why am I, the impaired person, held to higher standards than you?

The same logic applies for most mental health issues. Many people afflicted with them can’t control what comes out a majority of the time and it’s unfair to hold them to some angelic standard when they don’t even have full control over themselves. There needs to be some consideration that those people need some wiggle room in certain areas but not to the point where you disrespect them. There’s a huge difference between making accommodations and being patronizing.

If you want to know what I need or want then try talking to me instead of assuming.

The most disrespectful thing our society does is make decisions for disabled people. Whether it’s a matter of rights, services or even semantics there are a whole lot of non-disabled people who just assume what disabled people want or need instead of actually talking to disabled people and asking them. Maybe instead of thinking you’re doing the right thing or guessing, you could try asking the disabled person in your life. That way instead of being a martyr about it later and making the situation worse, they can you know….tell you what they need and want. Disabled people are trying to communicate all around the world in various ways but the non-disabled world just chooses to not listen half the time. If you want to know what a person needs or wants, respect them enough to ask them instead of assuming you know best and getting fed up later when it doesn’t become a miracle solution.

I assume you’d be offended if you told me you had a medical condition and I just started spouting solutions based on whatever bits I knew about that condition, without taking you as a person into account. That’s what it feels like every single time you dump on a disabled person about all the things you thought you were doing like it’s their fault. It’s good to want to help but it’s rude if you’re not going to consider my actual needs.

It’s not a competition.

I understand that I’m a difficult person to love and deal with sometimes. Most disabled people understand that. Hi there, society. We’re not the selfish, low mental capacity subhumans you think we are. It might also surprise you that most disabled people understand everyone has problems and it’s not about them. I love when people assume I just think the world revolves around me anytime I try to reach out to them and talk. It’s almost guaranteed the “It’s not all about you.” line will come up because I dared to talk about the pain living with disability causes me instead of keeping all my awful poisonous feelings inside where they belong. I’m sure it has nothing to do with you just not wanting to hear it and trying to shut the conversation down. It makes much more sense that your feelings matter and mine don’t because I’m disabled.

Here’s the truth. Underneath my disability I’m a human being and just like you as a human being I have problems. I have bad days. I have hardships. I also have every right to talk about those things as much as you or any other human being and I hate getting vilified for doing that. Non-disabled people want full attention when they talk about their problems but if a disabled person does it, someone almost immediately jumps down their throat and tries to shut that conversation down. Having a disability doesn’t give me less of a right to be human. It doesn’t make me anymore selfish then a non-disabled person griping about something. My problems may be viewed through the lens of disability but they are still human problems. My feelings may be slightly altered by disability but they are still human feelings. I laugh, cry and bleed just like you do. Disability doesn’t change that and it doesn’t change that I want to express myself sometimes. It’s unfair to expect a disabled person to just clam up for your convenience and you don’t need to turn it into who’s suffering more.

I’ve literally dealt with multiple people who when I try to open up about my depression come right out of the gate with how depressed they are or how much they’re in pain if I try to confide about my fibro. I didn’t come to compare notes. I was looking for someone to listen to me. It’s not that I don’t care but it’s also rude for you to make it about you. Life is not a game show. There is no free car behind a curtain if you out-complain another person. If you don’t want to listen then just say so and save us both time and energy.

The 7 most common forms of abusive supporters

It’s important to note that some of these are states you can fix. While these are common patterns that occur in abusive supporter types, not all of them are intentional and if you feel like you’re fitting into these, you can change if you want to be  a better support for the disabled person in your life. A lot of it is learning what you’re doing wrong and changing your focus to truly supporting the person. If you’ve severed a relationship being one of the below people, try taking the knowledge from this article and explaining to them you have better insight and want to start over. It will still take time to repair but if it’s worth it to you to keep that person in your life that won’t be what stands out about the process.

Dehumanizers

Dehumanizers are those who deal with disabled people by trying to make them less than human because they are disabled. The practice of “Ableism” if you’ve ever heard the term is basically this in a lot of ways. You can avoid being this person by remembering that disabilities don’t make a person less. They make them different. Disabilities don’t lower a person’s value or humanity. Remember that no matter what the diagnosis, a disabled person is a person. They are a living,feeling and breathing human being just like yourself that deserves love,respect and happiness as much as anyone else. It’s also important to consider that the need to feel better by making another person feel like less in any form points strongly to you having some personal insecurities you aren’t addressing. Dehumanizers are basically bullies masking themselves as advocates.

Vilifiers

Vilifiers are those who deal with a disabled person by turning everything back onto them. If you are a type who makes the disabled person in your life feel guilty for being sick or turns any sour interaction back on them as being their fault for being disabled or because of something resulting from their disability, then you may be this person. As I said above, disability doesn’t give me less of a right to feel or express myself. You can stop being a vilifier by remembering that disability doesn’t take away a person’s right to exist and just be a person, regardless of diagnosis. Being disabled doesn’t change the weight of a person’s feelings or opinions and it doesn’t take away their right to be upset or make mistakes like any other person. If you want the right to those things yourself, consider that the other person does as well and has just as much right to them as you do. Also consider that the things in our lives can’t always be someone else’s fault. Part of being a vilifier is a fear of personal responsibility or in some cases avoiding facing your own possible struggle with accepting a disability,so if you are this person, it might be a sign you need to do some soul searching or have an insecurity you aren’t addressing.

Fair-Weathers

Fair-Weathers are probably the most common unintentional type of abusive supporter. This is the person that wants to be there 150% for a disabled person when they’re stable or doing well but 0% when they’re actually dealing with the hardships of their disability. It’s very easy to let fear or ignorance turn you into a Fair-Weather but it’s also reversible once you learn to understand that support is only support when you’re there for the good and the bad. The best way to deal with being a Fair-Weather is to be honest. Many disabled people understand more than you know how difficult dealing with disability can be. They’re living with it and you are quite honestly just visiting the zoo and not living in the enclosure for the most part. Be honest with them and tell them you’re scared but communicate that. It means more to stay when you’re scared and try, but if you bail it will just make you look bad and sever the relationship with that person no matter how innocent your intentions are. If you’re an intentional Fair-Weather, it could just be a sign the best thing you can do is get out of the person’s life because it’s a red flag you aren’t really invested in that person and will just do more harm than good stringing them along.

Patronizers

Patronizers are the people who feel like they have to make special accommodations and treat the disabled person differently regardless of whether the person requests it or not. This can sometimes entail a sense of knowing better than the person or not being willing to truly talk to or listen to the person but can also be done as an unintentional instinct. Our society has a tendency to make disability synonymous with less and this is so ingrained into society people instinctively assume they need to accommodate disabled people as if they are less capable. The best way to combat being a patronizer is to remember that disability isn’t less in any aspect and you should never assume you need to make an accommodation. If a disabled person needs something they will ask you but it’s offensive when you assume you need to treat me differently and then possibly hold it against me later. We all need help sometimes but it’s not helping when you impose something based on assumption.

Martyrs

Martyrs are the people who claim to want to support a disabled person but then want to play the victim and guilt trip that same person when shit hits the fan. As mentioned above, living with disability is far from sunshine and rainbows. If you can’t deal with that and your first instinct is to fret about how much you do, how much you suffer and what a burden the person is, you aren’t doing them any favors and you definitely aren’t supporting them. If this is hitting a nerve with you and describes one or more interactions you’ve had with a disabled person, you may actually be a bully or an abuser trying to prey on what you see as a disadvantaged victim, and the best thing you can do is get out of the person’s life and let them heal and find true support elsewhere. Martyrs in some cases can be unintentional in their actions, but even unintentional martyrs can do the biggest favor by leaving that disabled party alone. If you’re doing it unintentionally it most likely means you were never in the relationship with an intention to help in the first place.

Do-Gooders

Do-Gooders are people who are helping the disabled person primarily out of pity but also to fill a void of feeling needed and heroic. These kinds of supporters do not help a disabled person even a little because they are there for themselves and use the disabled party as a charity case. No person feels good being treated as a charity case, so if your only reason for joining a person’s support network is you, then the biggest favor you can do for that person is to stay out of their life. Having a disability doesn’t debase a human being into a toy or a means for you to feel better about yourself. Have enough respect for yourself and for that person to just move on and get a healthier hobby. There a plenty of ways to boost your mood and self-esteem without abusing another person.

Buck-Passers

Buck-Passers are probably the second most common unintentional type of abusive supporter. It’s extremely easy to be a buck-passer and not realize it because this type is a person who lessens the amount of support they give based on other perceived sources of support the person has and this can be done unconsciously. For instance, you may be a buck-passer if you lower support when your disabled loved one gets therapy and medication. I’ve had plenty of relatives who  think they can do less because I have a doctor and pills. The pills won’t substitute love and moral support. Neither will a doctor. You may be a buck-passer by giving less support because a person has aged, and as we’ve discussed age doesn’t lessen the support a person needs. You may pass the buck to your disabled loved one’s spouse if they enter a married relationship but spousal support can’t fill the void of family support no matter how good it is. If you want to avoid being a buck-passer, remember that there’s no good reason to support a disabled loved one less. Nothing is going to substitute being loved and accepted by loved ones, especially immediate family. Realize every time that you tell the person they need to get pills or paw them off onto a therapist or crisis line without attempting to talk to them that you’re passing the buck. Personal support networks provide something that can’t be replicated by any medical or crisis resource.Your disabled loved isn’t looking for you to fix anything. They just need to know you support them without basing that support on outside conditions.

Conclusion

Closing the gap of communication between the disabled and non-disabled communities means we need to realize support needs to be a commitment and not a loosely thrown around idea. Wanting to be there for a disabled person in your life is going to fall short if it lacks the proper intention and a 100% investment in the person and not the diagnosis we see them under. The next time you step up to help a disabled person, make an effort to really understand what that means for you and for them. It may not be an easy journey to go on with someone but if you want to be part of someone’s victory, you also have to be willing to put yourself aside enough to be part of their pain.


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