Biologi, Debat, Digital Kunst, Illustration, Installation, Proces, UdstillingerANTHONY DEXTER GIANNELLIMay 24, 2022Anthony Dexter Giannelli, English, Funktionsvariationer, AbleismeComment

AN EXHIBITION CRIPPLED IN THE MAKING

Biologi, Debat, Digital Kunst, Illustration, Installation, Proces, UdstillingerANTHONY DEXTER GIANNELLIMay 24, 2022Anthony Dexter Giannelli, English, Funktionsvariationer, AbleismeComment

“7 years ago, 7 meters down, my feet met the ground. Then they greeted me, in the dark among the waters and invited me to stay the night...”

For immediate release at an undetermined later date:

Entering a typically unassuming gallery, visitors are guided to a darkened, enclosed, tunnel-like structure in the center of the space. A damp yet smokey scent powers through obvious attempts to mask it with florals and incense. The center structure is a specially built long corridor covered by a chain-link fence which, with the deliberate placement of lighting, casts a lattice shadow over the interior. Once inside each wall is flanked with roman bust style, icon-like images staring blankly towards the center, with a row of 7 chairs spaced one meter apart placed across from each guardian’s gaze on either end of the room.

A beam of strong light projects from above onto a small rectangular, red-glazed ceramic vessel, shallowly filled with water, inside a snake is seen meandering across the faces of these same guardians. The subtlety of the individually spotlit works is broken by the glimmering flood lit posterior wall covered in charcoal and pigmented images hidden through layers of metal leafing and natural textures such as dried flowers, achiote, chocolate, snakeskin and butterfly wings. The works encircle a single mirror. This portal presents itself as an ending to the physical space and a beginning to something beyond; the warmth resonating off the many facets of its surface beckons towards its embrace.

Anthony Dexter Giannelli. Rendering of an exhibition crippled in the making.

This is a slightly altered reimagination of the tunneled entrance to a sewage-ridden stream diverted underneath an urban center in the northeast of the United States; a physical showing of my artistic practice that unfortunately will not become a reality anytime soon.

I was left disabled from the injuries caused by this long descent, leaving me stuck for one night in that real-world underground waterway. Because of this, I’m dependent upon the financial support I receive from the system of disability work benefits that should strive to provide me with greater access to the opportunities that I would have had in my career if I was able-bodied.

Sadly, this is not the reality.

While the current system does provide me with the necessary accommodations to make a livable salary working the amount of hours that my body can, called a Flexjob, it is ironically inflexible in allowing me to choose the career path that I want. All income or economic activity in any way outside of a salaried hour-based contract creates a conflict with this system and can become grounds for losing my disability benefits all together. While well-functioning for an office-based career, any profession that involves freelance work, grants, or entrepreneurship is out of reach to disabled persons in this system.

This past year I started a medically supervised process that immerses me in that night where my disability began. Through being so vividly confronted with the emotions, visions, smells, and sounds of that experience, my PTSD treatment seeks to rewrite how I deal with the outcomes of that night in my daily life. I'm rewriting how I see the story of myself as a person, so I want to actively reshape the reality and the physicality of that event in an installation like this. I’ve now felt I’ve reached a place where I want to make my exhibiting aspirations a reality, however, I hadn’t truly considered the limitations the disability benefits system would have on my efforts.

Here’s how that process went:

Planning & Resources

Materials
For this project, I’d draw from my existing works on paper and video works but in order to realize the full installation, I would need to obtain both the raw construction materials as well as create new works. For example, access to ceramic facilities, which despite having the skill and training to do so, are outside the realm of what I’m able to make within my practice at home.

Manual Labor
Producing any physical work is of course tied to physical labor and ability, in order to create this as planned I would need to factor in transportation of materials and framing, exhibition setup, de-installation, and maintenance, etc.. If this were a part of an employed salary position I would qualify under my current disability working agreement to be alluded the extra help to handle the physical aspects of my “job” that I am not able to do.

Time and Ability
The reason I am able to do my artwork in the first place is that it acts as a restorative and meditative outlet for me to escape the chronic pain and discomfort I feel in my body. The planning and administrative tasks it takes to realize this project would go beyond my resources, especially while having to keep up my Flexjob, that according to extensive evaluations is equivalent to a full-time workload under my condition.

Financing
It goes without saying that all of these aspects come with each their own financial costs and because of my physical inability to do most of this myself, the costs are multiplied far above the average for an able-bodied artist. As I’ll detail below I’m cut off from grants as well as selling my works to finance the project so all costs would have to be covered by my “disposable” income.

Community and Network
The growth and success of an artistic practice is so often tied to connections with curators, other artists, press, and institutions so the disadvantages of not being able to participate in cultural life as such cannot be ignored. Unfortunately, most of this network lives physically through exhibition openings and events at galleries and institutions where physical accessibility measures and safety are not necessarily prioritized.

Work and photo: Anthony Dexter Giannelli.

Systemic Barriers

Making a living as an artist even with an able body is by no means easy, especially in a capital-driven system that does not see the value of creative careers, however, these difficulties are multiplied when you’re restricted from operating as a business in any way.

Establishing my Practice as a Business
The basis for most artists begins with registering your practice as a legal business from which any sales can be properly accounted for and paid taxes on, materials to create works can be purchased and applications to funding sources and grants can be sought. This first and vital step I have been explicitly prohibited from or would automatically forfeit my current benefits. This would be seen as a declaration that I have the ability to work a full-time job, overriding my extensively documented medical evidence.

Public and Private Funding Sources
Of course, because of this, I cannot apply for most or all grants and funding schemes to run my practice to its fullest. When I first brought this issue up with my caseworker, I was further referred to a number of government departments and entities who apart from being hard to reach all come with different responses to this issue. These offices are only open by phone a few hours per day where you wait in line for extensive periods to talk to a representative and if your inquiry is too complicated they simply hang up on you. Outside of this they encourage you to write an email, if you chose to write to them they either 1. never respond to your query even while required to do so by law or 2. respond months later.

The Sale of Works
The benefits and flexibility that come with operating your practice as a business allow you to sell works or receive fees for talks, media features, etc. and have these cover the costs of materials and exhibitions while leaving any outside employment choices largely unaffected. The laws and entities governing the work-life of disabled persons are by no means centralized and when seeking a precise answer to what will happen if I were to sell works, what I’ve been told ranges from lowering my benefits or that it would trigger an investigation into my working ability even removing my right to a Flexjob.

Consequences

With this information (or lack thereof) at my disposal, what am I to do? Which source is correct and which consequences would actually go into effect if I were to pursue a full-out career from my art practice? The reality is that without one clear answer to these issues I’m left in a gray zone; if I chose to move forward with financial involvement in my practice I’m blindly gambling a loss of my disability benefits. I’ve had to argue through long bureaucratic processes to convince the system of reality that medical professionals have already confirmed time and time again. Frankly, this is a gamble I cannot afford and would not be able to survive the consequences.

Risking an Unrealistic Raising of my Work Ability
Any critically thinking individual can easily understand the difference that exists between spending hours working on artwork peacefully at home on my sofa versus deadline-driven, desk work in front of a screen. However, once any monetary transactions are involved all critical thinking is abandoned, and instead, the evaluation for my overall working ability is at risk to be raised, and even lose the entirety of my disability benefits.

If I were able-bodied I would have the freedom of choice to have financial security through a “day job” where that workplace would in no way question what activities I do outside of working hours; because I sell a work, my employer would not then deduct this from my salary or force me to work more hours. Due to the politics of public money, I am not lifted to the same standards as if I was able-bodied but am instead heavily regulated and scrutinized if I want to combine a fulfilling artistic career with the flexibility and security of financial stability.

Funding my Own Practice
Due to the risks involved, I’m left with my hands tied in the situation that I’m in now, to leave my artistic practice as a “hobby” that can only be funded with whatever extra money I may have. With added costs of medical needs outside of the public system or things seen as convenient or luxury for those with an able body now a necessity: physiotherapy, deliveries, taxi, etc. being cut off from the normal means of making a living as an artist means my practice suffers from lack of investment into better resources and new ways of creating. If the time comes when I choose to make the leap and have full confidence in my artistic career I may not be able to return to my disability benefits at all if the financial gains of my career are to fail. This could trap me in making the commitment to a full-time job in any sector which is something my body simply can’t handle.

What Would Need to Change?

The essence of this issue is a lack of belief and trust in disabled and chronically ill persons; a fault in the belief that we should have control and choice over our own lives. Life as a disabled person is inherently more expensive, so living on a restrictive and scrutinized system of income is bound to produce issues.

Do we then hold hope for the art world itself to create an accessible environment for disabled artists? This would require deep understanding and structural change from the institutions themselves shifting their focus outside of financial transactions. Since disabled persons are often left out of the jobs and decision-making inside these institutions in the first place our perspective is easily lost, secondly, capital gain and the art world are lamentably inseparable. This leaves the ability of disabled artists to find success in their practice and remain financially stable intrinsically tied to the policies of government benefits systems.

Individual Solutions for Individual Problems
Because each disability requires such unique solutions this overwhelms policymakers who instead take the easier route of funneling our unique needs into a system that tries to force us to one single outcome that can in no way accommodate our needs on the individual level. For some, this system may fit their work-life perfectly for the time being but when the time comes to grow or forge new directions in our life paths the current system provides little flexibility. With guardianship over our livelihoods and support spread out and overlapping amongst numerous ministries and departments making these life changes will always run the gamut of losing our right to benefits. If one department says this change will not affect your support from their side another may cut support completely with no warning of the consequences beforehand. Clear answers to these questions are hidden under layers of sometimes contradicting legal frameworks.

Until something happens to change this way of thinking and shakes it to its core, where the main goal of policymakers becomes providing disabled persons with the same opportunities that we would have if we were able-bodied, then I don’t expect my situation to change. These goals and aspirations that I have as an artist will remain confined to paper, on the chalkboard of my studio, and in digital mock-ups only.

Living with Disability Demands Creativity
For me and other artists with disabilities, artistic practices help us to come to terms with a world full of systems that aren’t built for us. Through our practices, we seek to see fulfilling physical manifestations of environments that are made for us. We’re forced to build new perspectives to exist in a physical world where we are impeded from interacting with in the ways which we desire and in ways that are so easily overlooked by able bodies.

This story of limitations is by no means a white flag or obituary for my pursuit of an artistic career, I know that other forms of entry into the art world exist and that I’ll somehow find a way. However, the difficulties that arise from these structural and systemic barriers should not be passed off lightly. Policies created to improve the lives of disabled persons should be created with the goal of breaking down the barriers that block us from the opportunities of life with an able body, and this is not currently the case.

Even with the egregious privilege, we have here in Denmark, with some of the best livable circumstances for disabled persons in the world, it is still blatantly evident that the attitudes dictating what a disabled life should be have a long way to go.

ANTHONY DEXTER GIANNELLI

I spent much of my childhood with my grandmother, who surrounded me with Panamanian art forms such as Molas and Huacas, living alongside Catholic religious iconography. As an artist herself, she trained me in drawing and painting which I continued practicing until moving to Copenhagen, Denmark at seventeen. At University I studied Latin American Culture and lived in Medellín, Colombia where I was able to reconnect with much of the imagery I was introduced to early in life. After a life-changing traumatic injury involving water in 2015, I began drawing once again as a way to cope with the pain, isolation, and confinement from my limited mobility.

After living in Rome for a period in 2016, I saw my struggle with my disability embodied in monumental cemeteries and marble figures frozen and weighted down in motion yet still showing their own beauty. I’ve used these elements to recreate the feeling of drowning and inundation and over embrace of water through my own life story.

In addition to my artistic practice, I am also a part of UKK's Art Workers with Disabilities Working Group to address and bring awareness to these accessibility issues in the Danish art field.