Bare Necessities

Today marks the day the 4th anniversary of when I ‘came out of the box’ – the day on which I began to have a drastic shift in emotional awareness, clarity, and a lasting change in my affect. I could not have identified that the box was there beforehand, but even relative strangers to me at that time had recognized that something big had shifted in me, and I was no longer as ‘cold’ & ‘aloof’. As time has unfolded since, I have gained perspective about the box, what it was & why it got there.

 

For no reason in particular a song from my childhood popped into my head recently. It was a triplet from the Bare Necessities in the animated version of The Jungle Book.

Look for the bare necessities
The simple bare necessities
Forget about your worries and your strife

The song essentially is Baloo’s way of guiding Mowgli toward accepting poor circumstances and to be more open about going with the flow. It is a familiar sort of notion to me, one that I had undoubtedly carried a long time.

This notion – of passive acceptance of shitty situations – is a significant part of the coping mechanisms that created the box.

I had ‘accepted’ my mother’s dying and death in real time, at the expense of really dealing with anything for years. But no bereavement counseling was provided anyway, and I continued on from that experience in an environment where addressing the way I felt would have led to nothing. Denial and revisionism kept the truth at bay, though the closest it probably had come was when one brother had remarked that “She was a very complex person” in response to my sister’s feelings.

In the face of the immediate, physical bigger struggles – food insecurity, late rent, utilities being shut off – there wasn’t a space for dealing with death. Moving houses. New school. So on. Suppressing those other feelings, and entering a sort of emotional maroonment, was how the box manifested. To cope with deficiency in my daily life, I might convince myself that I needed less. My box filtered out all but the bare necessities, and sometimes even more.

But today is the anniversary of when I shed the box. That day when, having become vested in a new, nurturing & secure home environment, and faced with a challenging situation that called on me to be emotionally supportive in a way I had not ever been called to, the box lifted. The compacted layers of suppressed feelings slowly came loose over the last few years, but within the first couple days at least I had felt really happy. I was connected and in touch, and people in the house thought maybe something was wrong with me. I hadn’t gotten out of the box on my own, but precisely because my best friend needed me.

These days I am a lot more interested in bear necessities. And sloths 🙂

Bare Necessities

Social Insecurity

I am writing this to express to something that I learned during 2016, which is demonstrative of the failures in oversight that were part of my childhood, and how a few simple actions might have made a significant impact on a lot of people if they had been carried out in 2008 instead. While there are many open questions about what happened in the past, I am not looking for, nor open to, answers to those questions. Writing this has been beneficial to me, and I hope that it may further benefit others in the autism-supportive community that I have gained in the last few years.

 

In June of 2016, I enacted the series of steps needed to meet with the local Social Security Administration office about the survivor benefits I might have been eligible for at the time of my mother Andrea’s death. Amber and Ben had occasionally asked me since I was 17 about whether my biological siblings and I had received survivor benefits. I knew nothing at all about survivor benefits and had initially been resistant to pressing further into it.

On the one hand, I did not have a clear understanding of what the benefits were and what the requirements for my mother would have been to receive them. I also had a fear about what it would mean if these benefits had been received, but without my knowledge.

I became open to exploring this issue during 2016. I had already had to work with my school’s financial aid office so that I no longer would be dependent on my father’s tax returns, which had been repeatedly difficult to acquire, and to file my FAFSA early in January. That January I was finally freed from the mounting anxiety and disappointment around my father’s abilities, and with clarity and an honest appraisal of things I felt more prepared to handle what might be an uncomfortable truth about the Social Security benefits.

 

The first time Amber and I went into the SSA office, we learned that “no one had ever applied for benefits on [my mother’s] record”. There was a small sense of relief knowing that the survivor benefits had not been received and spent without my knowledge or input. However, I was also told that “there are no retroactive survivor benefits”, though I could apply for disability benefits on account of being autistic.

This response – that “no one has ever applied for benefits on this account” — seemed to indicate that there must be something that had been available, even if it was no longer available. Following her death, Andrea’s husband had written that an SSA agent had told my mother (later learned to have taken place by phone) that she hadn’t worked enough in the years prior to her illness for us to receive survivor benefits; he made sure to indicate how friends could make up for this “big part of [his] childcare fund” by donating money or time.

We now knew that the statement that “she didn’t work enough in her lifetime to have the government do anything for the kids” was discordant with the facts we were given by the SSA directly – that no one had ever applied for benefits on the account at all. We decided to press further on, returning with legal counsel.

We scheduled an appointment for an ‘application interview’ at which I went through the steps of applying for benefits through my mother’s account, as might have been done at the time of her death when I was fourteen, and four of my five siblings were still minors eligible for benefits. Near the end of the interview, I asked the Social Security agent if she could specifically tell me the amount that we would have qualified for had the benefits been applied for in 2008 when Andrea died. Where I had pictured the low number being on the order of $25 – $75 per month, I was not prepared to hear the actual amount: $450.00 per month, across all eligible children. At $90 support/child per month, this would have amounted to more than $30,000.00 in benefit before the last of us became an adult.

We spent years before her death with limited resources and on food stamps, and living in abject poverty after. I got clothing for school initially as a form of charity, but when I gained weight I had to buy clothes from the thrift store; I still didn’t have enough and spent a lot of time wishing no one would notice when I wore the same things over. I walked in shoes until the tread was gone and holes were letting rocks and water in, so that I wouldn’t have to burden my father with the charge of paying for replacement shoes. I was completely reliant on the generosity of others for things like textbooks, where the costs at times were easily $400. I was poor, and felt it. And every relationship I had in those years was colored by the fact that I was known to have little.

And while $450 per month of support wouldn’t have changed everything, it would have changed a lot. It would have kept the water or electric from being turned off. Or kept our internet on at times we had a lot of schoolwork to do. It would have meant that I had the security of asking to replace shoes, even if infrequently. It would have meant that I at least had something.

We were led to believe that we were eligible for nothing, and it was left at that. Did anyone question this? Did anyone suggest trying to fight the SSA over such a decision? It would seem not; that is, not until Amber, Ben and I sought answers. It is not unlike how my mother handled me being autistic – Andrea had told me she thought I had Asperger’s syndrome, and it was presented as “being socially awkward” and “having above average intelligence”. I received no formal diagnosis, no clinical intervention, and no further information. It was not until I was diagnosed at 19 that I had the opportunity to experience life with an actual autistic identity. Amber and Ben saw the same things everyone else had seen for years, and chose instead to follow-up, to ask questions, to pursue it like it mattered – exactly what Andrea and everyone else hadn’t with autism or the survivor benefits.

 

It is hard to picture my mother finding out that she had been denied a significant amount of money meant to cover the raising of her children after her death, and never mention it. She was loud & combative, and would over-zealously “defend” her children’s rights to a fault. I cannot wrap my head around why this sleight would have gone unmentioned until after her death. It is out of character for her to not have not made a big deal out of this, or to at least have found someone else to do so if she was too sick to make a fuss on her own.

Another relative confirmed that my mother claimed to have been told by the SSA that she was ineligible, in a phone call. She was sick, and even making phone calls was becoming increasingly more difficult to do alone. Calling the SSA takes over an hour on a good day to get to the point where you can ask an SSA employee a question. So I can only assume that someone helped her contact the SSA, maybe she even “pulled her cancer card” (this is how I heard her refer to taking advantage of being sick) in order to be provided more information than they typically would over the phone. My own success in 2 hours on the phone with the SSA was limited entirely to learning the procedure by which I could begin a conversation with an SSA agent in person and what documentation would be necessary, while no consideration was given to eligibility until I had an onsite appointment.

Throughout my mother’s whole illness, the house almost always was filled with friends, family, and occasionally professionals. Between that, and my mother’s propensity for confrontation, I do not understand why she would have accepted that we were being denied death benefits owed to us. Given that the Social Security Administration reported the fact that we would have been eligible at that time to receive a total of $450 per month, how was any of this misconstrued into a denial of death benefits in the first place, and why would she have not gotten any opinions from anyone else about it.

Regardless, no one did take another step until we went in 2016. And if anyone had taken those 90 minutes to do so in 2008, we would have been ensured the death benefits owed to us – to myself and ALL of my siblings.

 

I know that people’s lives go on after someone dies, but this, in the end, required very little work to find out, except a lot of emotional work personally to get there, and it would have had a significant financial impact if the time had been taken to do this 8 year ago instead.

 

We were poor before she died. And even with $450 per month we still would have been poor. It would have meant that groceries stayed in the fridge a little longer, and detergent in the laundry room. Maybe health insurance could be an option, a physical or a dental appointment – I had none for years.

The financial state of my upbringing tested every aspect of our basic needs – food, water, shelter, clothing, and security – and having that benefit from Social Security could not have fixed all of the problems. What it could have done though is allowed the 15 year old me to have a little less shame about what we had, and what we lacked, and to have a little more self-respect. This to me, is why it is worse to have found out we were eligible for $450 per month, rather than $25 or $50. As numerous as the helping hands for my mother were, this thing still managed to slip through so many people’s fingers, and what might have cost some time, I paid in dignity instead.

Social Insecurity

ACROSS THE POND

We have certainly tried, with at least every few posts, to have this site be about more than rare-steak, bloody-juicy stories of family dysfunction from our haunted pasts. We’ve hoped to make use creatively of the challenging pieces of magnetic poetry pieces we’ve been given (autism, dementia, PTSD, estrangement, death) and get them linked up seamlessly with the ones we love (parades, puppets, props, Tarot, “bedroom culture”, masks, and things that light up and glow).

We have spent two years groping, slothlike, towards data-gathering on the topic of processional arts and its participants on the autism spectrum. Sounds academic, put that way, but really, it was just that Tucker had had big shutdown/small meltdown at both of his first Krampuslauf Philadelphia/Parade of Spirits nights, in 2013 and 2014, and when we had figured out why, we started to think more about the people we didn’t know yet, and what their experiences were. Parade of Spirits is secular and “inclusive” — but it can only be inclusive of the people who show up for it. Right?

We thought maybe we could try to do even better.

We made a SurveyMonkey survey, trying to get data from other people on the spectrum, to find out more about how they felt about processions and parades, and whether making things that were used to make the parade beautiful, or being at the parade physically, were of similar value to them. Or at all equitable in attainability.

In 2015, we had a very polite and meaningless meeting with folks from the Autism Task Force at City Hall (Philadelphia is the first city in America to have an autism task force at the municipal level), who had seemed “receptive” to our admittedly loose plans to try to get in touch with people in the local autism community about interests and challenges in processional arts, but, when asked, the folks at City Hall in Philly would not share our survey on social media, since it did not have anything to do with any projects they themselves were working on.

Not even a little cut and paste? Okay then, Task Force. We continued to find ways to direct people to the survey when we could, and although the sample was not large, the responses had marked similarities. We continued to have Krampuslauf Philadelphia, which, by 2016, had officially been re-named Parade of Spirits, Liberty Lands, and we continued to talk about sensory issues and processional arts where and when we could.

And then, in the tiled-sliding-puzzle world of Facebook Groups, where you can suddenly find yourself next to anybody, I found myself in conversing with an autistic woman in Scotland. I told her about Parade of Spirits. She told me about herself. “My ‘special interest’ is what is popularly known as the Green Man – foliate head,” she told me on Facebook Messenger. “I hold both a Scottish Gazeteer and a bibliography on the subject, acting as volunteer curator for a private research collection on the subject.” But, when it came to attending events where the Green Man might be portrayed “live” — such as Edinburgh’s amazing Beltane Fire Festival — there were logistical bottlenecks. “If it was just the people +sensory , then because it’s my special interest I’d manage and take the hit of being in bed for a fortnight afterwards! But there is an AUDIENCE! and a large group of non-involved persons would be….. urgh!”

I was having a conversation I had wanted to have for years. I had liked the idea of it being with someone in Philadelphia, because we could have worked together on something in Philadelphia, but it hadn’t happened that way, and this was just as interesting.

Within a few months, I had found another woman to talk to about the same subject. She was also in Scotland.

We have had some skill-sharing ties to the Beltane Fire Festival folks in Edinburgh for years, and in fact at Liberty Lands have our own willow “garden” (one of twenty plants made it, but it’s prolific), named after our buddy Zander who set us up from across the globe, to learn about the use of willow withies in creating lanterns and puppets. I joked to Ben and Tucker that if we were going to hit dead ends in Philly, looking to be part of a conversation about providing greater participation to people on the spectrum who liked and wanted to have more of a hand in processional arts, that I’d be happy to just go to Scotland to have the conversation.

So close to right.

 

Shortly after Parade of Spirits this year, I saw that a conference called “Winter Festivals and Traditions” was asking for short abstracts from prospective presenters. It was easier for me to write the abstract than to not write it, and so I submitted it within hours of seeing it.

I did not think about getting chosen to present at the conference, mostly because I had other things to think about. So I was pretty surprised when I was chosen. The conference was at Oxford University. It was a little more than a month away, I explained to Ben, as contractors knocked on the door, setting off yelping dogs, and under-dressed children hurling themselves down the stairs as they do when anyone enters the house.

“Want to go to England?” we asked them, while showing the friendly pair of Ukranian contractors where we wanted to knock out walls to extend Béla’s bedroom. Béla has the smallest bedroom in the house, and is the only person with a full drum kit in their room, and  you literally cannot step into Béla’s room at night to check on his sleeping without hitting a crash cymbal.

In my abstract, I did not just write about my passion for making processional arts more accessible for people on the autism spectrum. But it’s in there. I enjoy public speaking, so I’m not worrying about my fifteen minutes, but very excited to find out about what else is going to be presented and who we are going to meet. The whole family is going. We are only going for a few days and not going to travel far from Oxford — it seems there is plenty to do there (I understand that it’s a destination for Harry Potter fans, which none of us is). We are thinking of going to Stonehenge (and if I know Tucker, he will want to be there at sunrise. But I think it is equally important that the kids see This Is Spinal Tap in preparation.)

I’m excited. I believe my big ol’ Leon Russell tattoo should be well-healed by then and I think I will get a skirt to show it off. I don’t buy clothes much, so if I buy an outfit for this conference it’s going to do double duty as The Thing I Wear To Tucker’s Graduation. (The stockings I wore at his high school commencement are still lying in my top drawer, waiting for “one more wear” before I wash them.) And speaking of Tucker’s graduation, he paid for his final term today. His degree is paid for. No loan to take out this year.  It is now all just right around the corner.

As we occasionally get to say here, sometimes things are just fine.

 

ACROSS THE POND

WE WROTE AN ARTICLE ABOUT SUPPORTED DECISION MAKING

Tucker and I have co-authored an article at the website of the Organization for Autistic Research:

Supported Decision Making: When Your Chosen Supporters Are Not Your Biological Family

The impetus for this article came about four days into 2016, when someone’s inaction could have cost Tucker the ability to continue going to school. Yesterday, when this article launched — weeks before 2016 disappears forever — Tucker had just finished a term where his grades were three A’s and three A-pluses, his GPA is 3.97, and he has completed applications to three PhD programs.

(And we have his graduation photos, and they’re really nice.)

What we learned to write this article got us from here to there.

WE WROTE AN ARTICLE ABOUT SUPPORTED DECISION MAKING