Leah Ivy
I am Leah Ivy, the granddaughter of DCC researcher Dr. Warren Brown. I have been involved for 4 years in a Law Magnet at my High School. I have developed an interest in how persons with disabilities are treated in the legal system. To explore this issue, I attended the NODCC conference in July 2024 and interviewed several families who have had a child with DCC encounter the criminal system, as well as an attorney and a social worker present at the conference. This essay explains what I learned.
A disorder of the corpus callosum (DCC) has a significant impact on the course of a person’s life, and the lives of their loved ones. For something so fundamentally life altering, why are the DCCs commonly swept under the rug in important social contexts?
It may be because DCCs are closely associated with autism. It may be due to the limited number of cases identified in the general population. Maybe it has to do with the lack of conclusive knowledge regarding its origins and outcomes. While scientists chip away at these problems, persons with a DCC and their families are left with the raw, unfiltered reality of what this condition looks like in day to day life … a reality that others cannot easily imagine.
One of the issues faced by persons with DCC and their families is when, due to uncontrollable aspects of the disorder itself, the person with a DCC becomes enmeshed in the criminal justice system. An individual who is already acquainted with the general symptoms of DCC will be accustomed to the causes and explanations for actions that might break a law. For anyone who is not, the most concise explanation is that when the corpus callosum, the bridge of connection between the two sides of the brain, does not form sufficiently (resulting in a DCC), the individual who is affected by it will likely have difficulty imagining the future outcomes or consequences of actions. This means that they will not have the capacity to fully and knowledgeably think through their actions before they engage in them. This also means that often, if an individual with a DCC commits an act that is outside of the law, they do not have their full mental capacity to understand that what they have done was wrong and illegal.
In the Criminal Justice System, there is an argument which covers this issue, or an “excuse”, related to mental capacity. The problem is, this excuse is often overused or abused by individuals who, using their fully normal mental capacities, broke the law in full knowledge of it and its consequences. Due to these abuses of an argument created to protect those with a mental disorder, it is a difficult argument for a judge to grant. Establishing diminished capacity (as might be the case in DCC) requires extensive research, in-depth understanding of the condition, and expert testimony. Due to the difficulty in establishing this case, families and persons with DCC can experience serious stress when attempting to advocate for their condition in court.
At the NODCC conference, I was able to speak with some families who have experienced this first hand in order to help me obtain a better understanding of the legal complications. In these discussions, it was confirmed to me that DCC is a very unknown disorder, and because of this, court professionals often have no prior knowledge about the condition and need to be educated. I heard from multiple families that they went through many attorneys before finding one who adequately represented their child with a DCC. All of the families I conversed with had the good fortune of being connected with the NODCC support system, and through this network they could acquire recommendations or connections for attorneys who were already experienced with DCC or willing to learn. But this makes one wonder: what about those who do not have the ability to find a good attorney, either for lack of network support or lack of financial access? This brings into question a wider social issue about the inequality of access to support systems, but puts it into the light of mental disorder.
In addition to this concern raised while interviewing families, another was brought to my attention. One of inequality of treatment in the system based on physical appearance. Through the stories I heard, I gained an understanding of the differences in the treatment of their children with DCC by the legal system related to whether an individual looks to be mentally deficient. Those individuals who physically resembled a disorder (such as Down’s Syndrome) experienced less trouble when teaching the court about their condition and securing the modifications they needed. On the other hand, those who did not visually seem to have a disorder were not treated in the same fashion.
One family I spoke with narrated that their child, who has complete Agenesis of the Corpus Callosum (ACC), was hard pressed to get the accommodations that they deserved in court. The professionals did not seem to believe that they did, in fact, have a disorder. This family’s attorney found and brought in an expert to detail what ACC is and how it affects the mind at the moment of commission of an illegal act. However, this expert had great difficulty in arguing the truth about ACC and its implications, due to the testimony of the prosecution’s expert witness, who was completely inexperienced with ACC and did not understand it. This prosecution’s “expert” seriously challenged their more qualified expert witness, proving that medical and psychological facts are not always enough to gain the respect and attention deserved.
This concept fascinated me because I realized that DCC, different from many other diagnoses, is not always perceptible to the naked eye. It can even be difficult for a listener in a conversation to catch, if they do not know what to look for. But, just like you cannot judge a book by its cover, you can never truly know the inside of someone else’s mind from a mere look or brief conversation. This may be why DCC is not as commonly acknowledged in society as something like Down’s Syndrome, and it may also be the reason behind misrepresentations and misunderstandings within the legal system. Such systems are far too quick to jump to conclusions about people based on immediate impressions, leading to false conclusions. This issue is particularly distressful when encountered in something with as dire consequences as the justice system. In order to show true justice to those who have broken the law, one must first display a willingness to listen and learn. Unfortunately, this is not always the case in the legal system, or in society.
According to Deona Kalala, who is an attorney, and President of NODCC, there are both for profit and non-profit lawyers that support the special needs community. Who to call depends on what you need. For example, you can hire a trained advocate for IEP/Special Education issues, or an attorney on a contingency in the case of discrimination due to disability, or a criminal attorney with experience defending those with mental disabilities.
An excellent way to find resources for the DCC community is to look at resources for the larger and more spotlighted autism community. The following organizations offer written resources as well as lawyers that specialize in various areas related to disability:
Autism Legal Resource Center https://www.autismlegalresourcecenter.com/
National Autism Law Center https://www.nationalautismlawcenter.org/
Autism Society https://autismsociety.org/resources/legal/
Autism Advocacy & Law Center https://www.autismlawcenter.com/