El trabajar en una Unidad de Rehabilitación para personas que tienen una discapacidad; el conocer y tratar a cada una de ellas todos los días me hace pensar en la definición de “Resiliencia” pero principalmente en los complementos que apoyan para que una persona sea resiliente.

Para ello me gustaría hablar de un caso en particular, una paciente de seis años de edad a quien por respeto a su identidad  llamaremos “Vanessa”, ella presenta un diagnóstico de cuadriparesia moderada a presencia de Guillain Barré, el síndrome de Guillain Barré es una enfermedad desmielinizante aguda que causa una rápida debilidad de las extremidades, con avance ascendente, afectando los músculos faciales, respiratorios y de deglusión. (Social, 2016)

La familia de “Vanessa” es de muy bajos recursos, habitan en una de las zonas más vulnerables de la comunidad, no cuentan con los servicios necesarios y el conducirse a los hospitales para los estudios pertinentes mermaba aún más su economía, el traslado de su domicilio a la Unidad es costoso y a pesar que el cobro de las terapias son simbólicas no dejan de alterar el ingreso familiar, sin embargo han dado prioridad a la salud de “Vanessa”.

Para que ésta pequeña salga adelante debe de tener otros apoyos externos que se desglosarán posteriormente.

Hasta la fecha no hay una definición unánime para describir la Resiliencia, Garmezy (1991) la refiere “como la capacidad para recuperarse y mantener una conducta adaptativa después del abandono o de un evento estresante.” Otro caso es la de Masten (2001) quien la define como “un tipo de fenómeno caracterizado por buenos resultados a pesar de las serias amenazas para la adaptación o el desarrollo” (citados en (Begoña, 2006)).

Sin embargo todos llegan al mismo punto, que es la capacidad de adaptación, de una manera positiva del ser humano para recuperarse de algún acontecimiento desfavorable para él; pero para que una persona pueda superar las adversidades debe de tener otros pilares como apoyo, entre ellos la aceptación, el amor incondicional y la autoestima.

El primer paso a considerar es el admitir que hay un problema que incapacita al individuo para seguir con su vida cotidiana, esto implica la comprensión y dedicación que deberá desarrollar el sujeto para adquirir destrezas así como saber resolver problemas para adaptarse a la nueva situación.

El segundo paso es el amor incondicional de las personas que le rodean, como la familia o los pares, quienes van a inyectar una sustancia importante para ella que es la confianza y apoyo que se demostrará por medio del cariño.

El tercer paso es la autoestima, que va más allá de la autoevaluación que tiene la persona de sí misma, es la valoración personal que promueve la iniciativa, la resistencia y los sentimientos agradables (Baumeister, 2003. Citado en (Myers, 2005)).

Casos como el de “Vanessa” se conocen todos los días y cada uno de ellos tiene una historia diferente pero lo que los hace iguales es la capacidad de ver ese infortunio de una manera positiva, es el sentido que le dan a la vida y lo que quieren en un futuro. Por lo que yo complementaría el concepto de Resiliencia, ya que hay autores que reconocen que depende  de otros factores, sin embargo no son agregados en la definición como tal.

Le añadiría lo siguiente: “La capacidad positiva que tiene una persona para recuperarse  de algún acontecimiento desfavorable para ella con apoyo de pilares fundamentales como son la aceptación, el amor incondicional y la autoestima”

Es por consiguiente que las personas con alguna discapacidad, que desean sobresalir teniendo obstáculos por superar, deben de tener el apoyo y el amor de las personas que los rodean, son quienes le ayudarán a fortalecer su autoestima así como la aceptación de la situación.

Bibliografía

Begoña, E. (2006). Resiliencia: Definición, Catacterísticas y Utilidad del Concepto. Recuperado el 7 de mayo de 2019, de http://revistas.uned.es/index.php/RPPC/article/view/4024/3878

Myers, D. G. (2005). El yo en un mundo social. En Psicología Social (págs. 39-83). México: McGrawHill.

Social, I. M. (3 de noviembre de 2016). Recuperado el 8 de mayo de 2019, de www.imss.gob.mx: http://www.imss.gob.mx/sites/all/statics/guiasclinicas/089GER.pdf

LIC. PSICOLOGÍA SOCIAL BEATRIZ SEGURA ROSAS

Four years ago, I was privileged to participate in a poem reciting competition and emerged the winner of three awards. My success was featured in numerous articles about people with disabilities and who are defying odds.
When the master of ceremonies called my name and I was riding onto the stage in my wheelchair, little did I know my poem would win me three accolades. In terms of the number of awards, it was the biggest victory for a single participant that night.
Yet, immediately after the competition, there were numerous comments in news articles and on social media platforms about how I was not that good; about how the judges felt sorry for me because I was in a wheelchair.
It served as a reminder to me that, when you have a physical disability, you have to fight harder than most of your peers to reach your goals and you have to fight even harder to prove that you got there because you deserved it, not because the world felt sorry for you.
So, stories about persons with disabilities’ paths to resilience are often reduced to singular charity narratives and inspirational speeches but, despite the odds, we defy every day to be more than that.

Preparing for university
As a person with a disability who uses a wheelchair to get around, the education system in Rwanda is a nightmare, literally, from the way institutions are built to the way their education programmes are offered.
Most of my friends with disabilities who were good in school did not make it to university, mostly because having disabilities means everything is extra-expensive and requires more efforts, from transport to withstanding bullying in schools to finding the school that is ready to accommodate you, among other issues.
So, when I was preparing for university, I knew for the first time in my life that I was not going to settle for less because I fought so hard to survive my high school years in a small village and finish with high marks.
It meant I had to fight for all friends who didn’t make it, for everyone whose story could be reduced to just a charity case.
Luckily, I was able to be selected into the African Leadership University and Southern New Hampshire University (SNHU) through its Kepler programme, and I ended up attending SNHU because it was more accommodating to my situation.
It is It can be discouraging on occasion to realise that my path to resilience means I have to work harder than others to achieve the same thing and to prove I deserve to be there.
Earlier last week, I reflected on my experience as a student with disabilities when I recently attended the virtual dialogue titled ‘Pathways to Resilience: African youth and Africa’s transformation’ presented by the Alliance for African Partnership (AAP).
This is a consortium co-created by Michigan State University with different African institutions and other international collaborators.
What struck me and stayed with me after the dialogue was that it matters who tells a story.
In my circumstances, this means that the negative narrative surrounding persons with disabilities in higher education results in negative developmental outcomes such as our ‘deficiency’ and ‘dependency’ is emphasised instead of our resilience and threads of strengths because we are not the ones telling these stories.

Alarming concerns
Disability per se is still considered a barrier to self-enhancement and making important contributions to society. It is even harder for people with disabilities to acquire higher education.
This is largely because we live in communities that are subconsciously and consciously socialised to have negative attitudes towards the conditions of persons with disabilities.
Elizabeth Mwambulukutu, a storyteller who has been using her talent as an instrument for shaping community narratives, emphasised during the AAP dialogue that it matters who tells the story, emphasising that, “According to the African Narrative, only about 14% of the story about Africa is positive in the global media.” The percentage raises concerns and one can ask: “Who is telling these stories?”
When you look at the percentage of people telling the stories of persons with disabilities, you find out they are people who do not have these disabilities.
So they present stories from their perspectives, namely that disability is a barrier to self-enhancement. Hence, higher education institutions tend to have low expectations of students with disabilities that undermine their potential.

Poverty
The reality of financial advantage or disadvantage when it intersects with disability is known but not spoken about. It is important to recognise that some of us are privileged.
I heard a girl, Chantal, with a physical disability, who spoke about disability and poverty where she encountered “a wide range of out-of-pocket expenses” that weighed heavily on her household finance. “I had to drop out of school because my family could no longer afford to pay for me,” she said.
It is extra difficult for persons with disabilities to overcome these difficulties because studying when one has disabilities, coupled with poverty, is extremely expensive. On top of that, there are so few scholarships or opportunities to support persons with disabilities.
Discussions around inclusion often centre on infrastructure and equal treatment without recognising that equality cannot be achieved when people are not starting from the same point.

On mental health
Most studies today emphasise that the primary factor to resilience, the capacity to adapt well in the face of adversity, is having caring and supportive relationships. The emotional climate at home and at school where most persons with disabilities are predominantly victims of attitudinal biases can take a toll on their mental health.
The bullying and discrimination at home and at school reduce their self-esteem and can, in turn, cause depression, unhappiness, insecurities, and poor performance, among other problems.
There were times when I went through this phase, and I did not want to be in the school because my fellow students stared at me or the way they sometimes acted around me. I would look for all possible excuses to skip classes because, most days at school, I felt as if I was in survival mode, and it can get tiring to exist in survival mode without getting a chance to enjoy what’s around you.
I was able to go through that phase because I had the privilege of growing up in a loving and caring family. I knew that I had a loving family to go home to and it kept me moving, but that is not the case for all persons with disabilities.

Rwanda’s perspective
It is worth appreciating the progress that has been registered over the past several decades in the Rwandan education system as far as inclusion is concerned.
First there is the law requiring new institutions and each home to set up accessible buildings and for old institutions to renovate their infrastructures and make them accessible to people with disabilities.
There are also laws that prohibit discrimination on the basis of disability and guarantee that people with disabilities have an ‘equal opportunity’ to education and to participate in Rwandan life. However, there is a need to involve people with disabilities in decision-making.
A few days ago, I went to a certain college to conduct my bachelor’s research for my final year in university, and it had a path for wheelchairs. However, when I tried to use it to get to the second floor, it was too steep, and required two students to push the chair.
I thought of who made the path and immediately came to the conclusion that they did not consult a person who uses a wheelchair, because that path is not accessible at all.
All in all, the drive for inclusivity will never be achieved if policymakers do not involve persons with disabilities while making these policies.
It matters who tells the story, and it is the people with disabilities who can best explain their experience and what inclusiveness really means for them.
I still remember the first time I went on stage to recite my poetry and how my winning story became one of the world ‘feeling sorry for me’.
Our stories, as persons with disabilities, are told with a greater focus on our vulnerability and the lesser focus on our resilience even when so many individuals with disabilities have been resistant to different forms of adversities and capable of overcoming different life challenges and difficulties.
The message I got from the AAP dialogue still echoes in my head: I have so many stories to tell. I have to tell them because it matters who tells the story. And here I am defying all odds and telling my story and that of my peers, many of whom have not been able to attend even basic education.

This commentary has been written by Ange T Ashimwe, a third-year student enrolled in the Southern New Hampshire University’s Kepler programme in Rwanda.

La résilience est une notion qui permet de aux personnes qui ont dû subir un traumatisme ou qui subissent un handicap, à faire ressortir des dons ou des ressources cachées qui peuvent se révéler très efficaces quand on les sollicites. La résilience consiste ” à vivre avec”, dans le sens ou cela fait parti de la vie de l’individu. C’est donc la capacité de vivre après l’annonce d’un handicap par exemple. il existe différents facteurs de résilience :

– Des facteurs intrinsèques qui sont des capacités de réinvestissement des expériences passées tout en incluant le vécu traumatisant. Ils permettent donc l’organisation et la construction de la résilience.
– Des facteurs extrinsèques, ces facteurs dépendent de la société, ils vont mettre en place des facilitateurs de résilience qui vont permettre d’avoir une meilleure qualité de vie.

Ces facteurs extrinsèques sont la reconnaissance sociale, la législation sur l’emploi, la protection sociale, l’aménagement des espaces, l’accessibilité aux lieux publics et l’accessibilité à la technologie. Ces différents facteurs extrinsèques vont dépendre des politiques qui sont mises en œuvre pour l’intégration totale de la personne handicapée dans la société. Ces facteurs peuvent être la mise en place des lois sur les personnes en situation de handicap ou bien encore la mise en place de différentes structures qui permettent leur accueil.

Il existe différents acteurs de résilience tels que des professionnels, des politiques, des associations et des membres de la famille. Nous pouvons dire que la famille joue un rôle important dans le processus de résilience ainsi que l’environnement car la personne peut se réapproprier des valeurs comme être citoyen actif et participatif.

Il existe des limites à cette résilience telles que la gravité des fonctions intellectuelles qui vont empêcher la personne de pouvoir faire le processus de résilience.

La résilience est modulable, c’est-à-dire qu’elle s’adapte aux différents traumatismes. Elle peut être vu comme un mécanisme de protection vis à vis de la personne handicapée. La résilience chez la personne handicapée est un processus important et efficace car celle-ci présente un ensemble de sentiments et d’émotions ainsi que des comportements qui sont favorable à cette résilience. Cependant, toutes les personnes ne sont pas considérées comme résilientes du fait de leurs capacités personnelles.

in https://blog.univ-angers.fr/handicapsociete/

Adapted swimming is one of the most prominent Paralympic disciplines. The creation of more and more accessible pools have contributed to the popularisation of this complete and stimulating sport, one of the few with continuous presence since the first Paralympic Games of Rome in 1960.

Benefits of adapted swimming

The ancient Egyptians were already using aquatic activities for therapeutic purposes for people with mobility problems, improving their independence and safety in the water.

If to this we add that in adapted swimming, being an aerobic sport, all the muscles of the body are worked and toned, allowing you to gain strength and resistance, also having a relaxing effect. This is a sport that improves basic physical capabilities and is an alternative for the physical and/or psychological rehabilitation and recovery of many people.

In addition, like any other sport, adapted swimming can be used to promote the integration of the disabled, and their social relationships through educational activities developed in adapted swimming pools, reinforcing the self-confidence of the participant, raising awareness about their personal potential, or serving as a driving force for overcoming fears and personal barriers.

So, whether for staying in shape, looking for a competitive sport or more utilitarian interests, adapted swimming has always been a sport that brings a multitude of benefits to those who practice it.

Categories and classification

Adapted swimming is, along with athletics, basketball and wheelchair fencing, darts, snooker, archery and table tennis, one of eight sports that have been practiced since the first Paralympic Games.

Athletes of all disability groups can compete, in the same styles and categories as conventional swimming - freestyle, breaststroke, backstroke and butterfly - and at practically equal distances (50 metre pool with 50/100/400 metre races).

Adapted swimming athletes are classified according to how their disability affects them when practicing a particular swimming style. The categories of S1 to S10 are for swimmers with a physical disability, cerebral palsy being S1 for a greater severity and S10 for the less affected. Category S11 is reserved for the blind, S12 and S13 for the visually impaired and S14 for the mentally disabled.

The "S" indicates freestyle, backstroke and butterfly events, while "SB" is used for breaststroke. In this category, some physically disabled swimmers compete in a lower class since more leg propulsion is needed. This same rule is used for the category "SM" (medley or mixed events).

Curiosities about accessible swimming pools

Accessible swimming pools are essential for the practice of this sport as some users need to be lowered into the water with cranes. They otherwise do not require many adaptations, although in some cases it’s possible to use extra equipment such as arm bands or flotation belts.

One of the key moments of adapted swimming is how the athlete takes off, which can be done from three positions: standing, sitting or directly from the water. In addition, adapted swimming pools are provided with quilted structures on edges, walls and floors, and swimmers with blindness or visual impairment are warned of the distance they are from these so that they can make turns with accuracy and safety.

Paralympic swimmers in history

Finally, we will mention some of the athletes who have gained a foothold in history from competing in adapted swimming. The most celebrated Paralympic athlete of all time is the American Trischa Zorn, a visually impaired swimmer with a record of 51 medals in 7 Paralympics (41 are gold, 9 silver and 5 bronze), and she set an unprecedented record of winning 12 gold medals at the 1988 Seoul Paralympics.

Another athlete who has set records is the French Béatrice Hess, a swimmer whose cerebral palsy did not stop her from winning the fitting nickname of "Thorpedo": in Sydney, she broke 9 world records. Both are followed by the young Australian Jacqueline Freney, already considered one of the best swimmers in history and who won 8 gold medals at the 2012 London Olympics.

Another one would be the Spanish Teresa Perales. After neuropathy that paralysed her from the waist down, she learned to swim - an "adventure" that allowed her to participate in the last 4 Paralympics and win 26 medals (7 gold, 9 silver and 10 bronze).

All these athletes are genuine examples of overcoming a disability, although you don’t need to practice this sport at the highest level to enjoy it. Do you fancy having a go?

in https://www.sunrisemedical.eu/