‘Margarita with a Straw’. It is about Laila, a girl with cerebral palsy from India that comes to New York to pursue her study. Back in India, Laila lived with her parent and little brother.
She is very passionate in music and is very talented in writing lyrics. However, she sometimes got discriminated for her disability. Because of her disability too, she struggled in her searching for a partner. After she got heartbroken of rejection, Laila relocated to New York for her undergraduate education.
In New York, Laila met a blind girl, Khanum, and started a complex
relationship with her. After a long journey of self-discovery, Laila finally
learned to accept herself unconditionally despite her disability and be content
with everything she has in life.
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Throughout the movie, Laila faced so many difficulties because of her condition. One of them is she has to depend on her wheelchair to move everywhere she wants. There was a scene when the elevator was broken, some men workers had to lift her and her wheelchair upstairs. Plus, she can stand up only if there is someone to support her.
Laila also struggled to speak. Every time she said something, she sound slurred and almost unintelligible. Other than that, Laila also struggled to do house chores like cooking or cleaning. When she lived with her mother, her mother will do all the cooking. But when she had to live by herself, she cannot even break an egg into the pan. Lastly, she found it very hard to find love.
When she first confessed her feeling towards a guy she liked, the
guy rejected her making her cry badly the moment after. Because of that, Laila
started to have issue with her sexuality until she involved in bisexual
relationship.
The possible causes of the communication difficulties
The cerebral palsy that is suffered by the main character, Laila, is a brain disease that causes paralysis. It can happen due to the damage to the brain associated with muscle control.
In this case, Laila is having difficulty mainly in her fine motor skills like writing and grasping and in some of her gross motor skills like standing up and walking straight. Most of her movements seem jerky too. Objectively looking at her physical feature, Laila has a ‘scissor gait’ where her knees and tights constantly touch which can happen due to constant flexing of adductor muscles. Other than that, despite her struggle to speak clearly, Laila’s cognition is intact. This can be seen through her ability to study at university level, write song lyrics, speak English, understand jokes and play chess.
Based on above signs, the cerebral palsy suffered by Laila can be a spastic-typed. Spastic cerebral palsy can happen due to lesion possibly at the motor cortex at the frontal lobe. This part of the brain is functioning in controlling and coordinating muscle movement by the use of upper motor neurons. The damage to the motor cortex can result in symptoms like hypertonia (increased muscle tones), muscle stiffness and eventually, difficulty to move. Hence in this case, Laila shows jerky movements and has ‘scissor gait’.
However, the damage may not affect the deep structure of the brain like basal ganglia. This is because Laila did not show any involuntary movement like stitching or trembling. Basal ganglia is functional for coordination of fine motor skills and voluntary movement. In this case, by looking at the symptoms, it can be said that the basal ganglia is not affected by the damage.
For her language skills, the only domain that is impaired is her phonology characterized by poor articulation. This is because of the same reason which is damage to the motor cortex of the brain without affecting the part of the brain that is dominant for language processing like Broca’s and Wernicke’s area. The muscle stiffness due to the damage can affect all parts of the body other than the limbs including the tongue, face and vocal cord. Because of that, Laila is very struggling to speak causing her to vocalize, produce slurred speech and hard to understand despite her good comprehension of language and cognitive performance.
Throughout the movie, there were no history of postnatal causes
like head trauma or accident that have been mentioned. Considering this, the
cerebral palsy that Laila has can be a neurodevelopmental disease which means
that something happened to the area of the brain during its initial development
or the sensitive period that cause her to be born that way. The possible aetiologies
that may contribute to this damage may happen prenatally (before birth) or
perinatal (during birth). Examples of prenatal aetiologies are exposure to
radiation, infections such as toxoplasmosis, rubella and cytomegalovirus, and
hypoxia. Hypoxia is a condition that can happen due to insufficient amount of
oxygen supplied to the developing brain during pregnancy. Next, examples of
perinatal aetiologies can be infection or birth asphyxia (oxygen deprivation)
that may happen when something gets in the way of the baby breathing like
umbilical cord coiled around the baby’s neck during delivery.
The management
As SLP, the first step I can do in managing communication difficulties of Laila is determining her main concern through a systematic and comprehensive assessment. This can be done through examination of her case history, oral cavity, audiology test, articulation assessment and more. A comprehensive assessment is important to get a big picture of patient’s communication problem and find out what are the underlying causes that can be addressed through speech and language intervention.
Next, I must plan a treatment plan tailored to patient’s specific struggle. In this case, I should focus the treatment on Laila’s articulation problem because that is the part of her speech that is prominently impaired. In my intervention, one of the therapy that I can do to help reducing Laila’s communication problem is articulation therapy. Through this therapy, I can encourage her to make specific sounds while focusing on the mouth movement to produce it by looking in the mirror. Besides, I can also help her strengthen her mouth muscle by doing exercise like blowing and breathing. This by the way, can also strengthen the abdominal and diaphragm for breath control.
However, the intervention for communication problem in people with
cerebral palsy does not necessarily need to be focused on speech production.
Instead, as SLP, I may also suggest Laila the use of some alternatives or to be
exact, assistive devices. These include tablets, talking computer with
keyboard, specialized software and more. This alternative is also called
augmentative and alternative communication (AAC). Within my scope, I can help
the patient to choose the right AAC system according to their needs and guide
them to use it in their daily interaction with other people.
Self-reflection
My self-reflection after watching this movie is to never take my healthy state for granted especially the ability to communicate well in daily life. Through communication, I can achieve many things such as conveying my thoughts, requesting needs and desires, express feelings and building relationship with other people.
Besides, the ability to move normally is just important as much. The ability to move our limbs like walking and reaching out to grasp something enable us to do many works easily that Laila may find it difficult to do. For examples, walking upstairs, cooking and even being qualified to many job opportunities. According to The Washington Time report (2005), in developing countries, 80% to 90% of persons with disabilities of working age are unemployed, whereas in industrialized countries the figure is between 50% and 70%.
The movie has impacted me in the way I see people with cerebral palsy. From the character Laila, I learn courage and confidence instead of recognizing her by her obvious weaknesses. For example, despite her limited movement, Laila did not give up in her studies and always showed up in public without feeling ashamed of her condition. She even pursued her study oversea and made friends with many people she met. In my situation as a student, I can apply these values to do well in my study and stop giving excuses when there are obstacles coming in my way.
I also learned that people with cerebral palsy do not like other people to mention them by their condition. For example, when Laila and her band won the singing competition, she refused to give her speech when the emcee asked her to share her struggle as a person with cerebral palsy instead of acknowledging her for the good lyrics she wrote. From this scene also, I learned to never underestimate, discriminate or even put a label on people with disabilities. In fact, the Commission on The Status of People with Disabilities report (1996) had adopted three guiding principles which are equality, maximizing participation and enabling independence and choice.
Other than that, I learned to always be helpful especially with
people with disabilities and to never take my good deed for granted. When the
elevator was not functioning and Laila had to depend on some men to lift her
upstairs, she was very sorry to burden them. Dr Vivek Baliga (2019) in one of
his articles stated that having being reminded
constantly of your limitations can result in inferior feelings which is not
good for someone’s mental health. As a person who is physically healthy, we
should take helping people with disability as our responsibility which we do
voluntarily without expecting reward from them.
The change
After getting some insights of cerebral palsy from this movie, one of the things that I would do differently, especially as an SLP, is to enhance my knowledge and to improve my clinical skills through comprehensive learning of cerebral palsy. This way, I will be able to always keep myself up to date to new information and new approach of treating people with cerebral palsy. With lots of knowledge too, I can make the best of clinical judgement that my patient can benefit from.
I would also raise awareness of cerebral palsy among local society. In this movie, Laila is shown to be less discriminated when she came to America compared to when she was living in India. This shows the awareness among people living is Western countries that encourages them to be respectful and treat people with cerebral palsy accordingly. For example, in United States, March has been celebrated as National Cerebral Palsy Month since 2006. There, they even celebrate Cerebral Palsy Awareness Day on every March 25th by wearing green, using hashtags and donating to organizations such as Cerebral Palsy Foundation.
By advocating cerebral palsy, I will also have the opportunity to prevent the risk factors. This includes encouraging people to make regular medical check-up and getting vaccine. For example, rubella, or German measles, is preventable if women are vaccinated against the disease before becoming pregnant (NIH, 2020). Plus, acquired cerebral palsy that is caused by brain injury can be prevented by practicing safety precautions such as using car seats for infant and toddlers and seatbelts for adults.
Furthermore, as SLP, I will generate new ideas of communication alternatives so that people with cerebral can benefit from AAC with more options that suit their needs. Despite electrical or mechanical engineering is beyond my scope of profession, I can contribute to the improvement of the devices by integrating my knowledge of communication needs with the communication devices function. This is possible because the communication alternatives have been developing from a simple photobook we commonly find in speech clinics to the speech-generating devices that is specially used by Stephen Hawking.
Last but not least, I would also involve in multidisciplinary team to maximize the health care service towards my patient. This way, I can get access to many new information including those beyond my profession and make a holistic and thorough clinical judgement for the best outcomes. For example, whenever I have to deal with cerebral palsy patient, I can refer the family members or their physician to gain more understanding of their condition.
