by Jhia Jackson
Quality of life is a standard phrase that can often be tossed into medical and bioethical discussions. When referring to a patient, this term sums up values such as respect for all persons, dignity, and serving the best interests of the patient. However, it can also be used to add validity to what would otherwise seem like an emotional response. “I wouldn’t want my child’s quality of life to be affected by…” “Well what sort of quality of life would they have if…” “Yes, but that’s not a good quality of life! They are missing out on…” “Not everyone can handle that type of quality of life though…”
Phrases like the above are used to mask one key emotion: fear. Fear of the unknown. Uncertainty about our ability to thrive with a life we are unaccustomed to. Anxiety over accepting an unexpected challenge. Nonetheless, quality of life plays such an important part in our decision-making because all of our fears and concerns stem from a place of love.
As potential parents are faced with the opportunity to screen embryos, mix and match selected DNA, and generally have more influence on the genetic make-up of their child, the questions surrounding “quality of life” are beginning to manifest themselves in a whole new way. No longer are the outcomes shaped by what type of life they had been living, and what a person would want moving forward. Reproductive technologies allow us to ask what we want for this potential person, and then make choices that will affect their entire lives. For those that have limited experiences interacting with people who are living with disabilities, answering quality of life questions may be negatively impacted by a lack of understanding.
ReelAbilities: NY Disabilities Film Festival promotes awareness and appreciation of the lives of people who have different disabilities. The films include showing the day-to-day lives, medical experiences, work experiences, and artistic expressions of people with a wide variety of diagnoses. A quick scan through the film descriptions shows unique themes that are often not discussed or easily found in the media: a successful matchmaker, a car manufacturing company with over 1200 developmentally disabled workers, views about the implications of genetic enhancement, and much more.
The festival lasts from March 6-11 and is hosted by the JCC in Manhattan with venues throughout the city. Tickets, scheduling, and further information can be found by going to www.newyork.reelabilities.org. This is an excellent opportunity to watch great films, learn more about a variety of disabilities, and speak with others who have experiences within the disabled community. If you are unable to attend, even just browsing through the website may provide some more insight into answering questions surrounding quality of life.ReelAbilities: NY Disabilities Film Festival March 6-11 www.newyork.reelabilties.org ReelAbilities National program, other cities www.reelabilities.org