Orador motivacional para fomentar el buen trabajo en equipo, superación personal, autoestima y liderazgo entre otros. Brindo asesoría a empresas para facilitar el buen funcionamiento de una programa abierto a la inclusión de la Diversidad.
En este blog encontrarás interesantes artículos sobre políticas varias de inclusión y trato de gente con algunas discapacidades al ambiente laboral.
Conferencista y Especialista en Diversidad e Inclusión
Contáctame: linktr.ee/sergiokabande
“You don’t look disabled”
Mark’s story of commuting with Ulcerative Colitis
Mark has lived with Ulcerative Colitis for 29 years and commuting to work every day is a real struggle because of urgency to poo and chronic fatigue. “Where is the nearest toilet? Will I get a seat?” These questions are constant worries. On top of this, Mark faces discrimination from people who don’t realise ‘not every disability is visible’.
A rush hour commute into central London can be a nasty experience for me because of my chronic fatigue and urgency to poo.
It’s usually impossible for me to get a seat unless I travel in after 9am. I typically use the toilet 3-4 times before I leave home, this means I’m already fatigued so standing for a 25min journey is physically draining for me. I don’t ask for a seat, because to look at me I’m a young man with no visible disability. Previously I’ve been asked to give up my seat by other commuters, typically people are fighting the corner of someone elderly or pregnant - I don't challenge them as I know I’ll just get a mouthful of abuse. It makes me feel small and worthless because today’s society judges you on how you look. And when you don’t look disabled people think you’re not worthy of a seat.
One of the stations on my route only has an accessible toilet and I have been told by station staff, "You shouldn't be using it, you’re not disabled". When I tell them I have an invisible condition and that not every disability is visible, they just shrug their shoulders. Members of the public have also said things or looked at me in disgust for using an accessible toilet. All I want is some understanding of what living with Crohn’s or Colitis is like!
“It sounds cliché but don’t judge a book by its cover. You don’t know the story of the person using an accessibility toilet or sitting in an accessible seat, nor are you entitled to know. They’ll be using them for a good reason and will appreciate your understanding!”
Crohn’s & Colitis UK knows that not every disability is visible – "we’re campaigning to change public perceptions of disabilities by raising awareness about Crohn’s Disease and Ulcerative Colitis and changing accessible toilet signage. It’s easy to make a difference, you can get involved today."
Conferencista y Especialista en Diversidad e Inclusión
Contáctame: linktr.ee/sergiokabande
Disability and Higher Education: “But You Don’t Look Disabled": Legitimizing Invisible Disabilities
According to the United Nations Development Programme, the global literacy rate for adults with disabilities is as low as 3 per cent, and only 1 per cent for women with disabilities. The 1 billion people with disabilities are the world’s largest minority, accounting for about 15 percent of the global population. Therefore, it is imperative that they are fully included in society, starting with having equal access to quality education.
However, students, scholars and researchers with disabilities in higher education remain under-represented and they are among the most marginalized, vulnerable, and excluded groups on campus. They struggle with accessibility to learning facilities and face various forms of stigma and discrimination, as well as barriers to exercising their rights. Inclusive education is important not only for students, scholars and academics with disabilities but the societies they live in, as it helps to combat discrimination and to promote diversity and participation.
In the disability and higher education interview series, United Nations Academic Impact (UNAI) highlights the contributions of intellectuals with disabilities to the world of academia and explores ways to build a truly inclusive learning environment. This article discusses the importance of recognizing, legitimizing and accommodating disabilities that are not outwardly seen, intellectual disabilities, and the impact this can have on students’ educational and life outcomes.
“But you don’t look disabled”, “your hands and eyes are functioning, you are physically able, why are you looking for an excuse not to get your work done?” These are just a few examples of the comments directed at Oladoyin Idowu as a young person with dyslexia, a learning disability that makes reading, writing and comprehension difficult for her, but is often not recognized because it is not easily visible.
Oladoyin is a 21-year-old psychology major in her final year at Redeemer’s University in Osun State, Nigeria. She is also an advocate for neurodiverse learners and founder of One Word Africa Foundation, a civil society organization that focuses on creating awareness of neurodiverse learning disabilities. According to Oladoyin, her disability has propelled her toward some of her most cherished achievements to date.
“Every child gets to school for the first time with curiosity and hope in their heart,” Oladoyin said, recalling her experience starting school as a student with an undiagnosed learning disability. “The moment you get into that space, you realize that you struggle, that you are not up to par with your peers. It starts to crush your confidence.” She always knew something was different about her, thinking to herself, “Doyin, you’re not like every other person.” However, her questions posed to adults around her, including her doctors, about this “difference” were always shrugged off, oftentimes for a lack of understanding.
Having an undiagnosed learning disability throughout her primary and secondary education meant that Oladoyin did not have the support necessary to perform at the level expected of her. Her typical school year consisted of countless home tutors for each subject, even during holidays, and in several cases punishment from her teachers when she did not produce expected results. However, these symptomatic remedies did little to foster her learning. To “survive school”, Oladoyin had to discover learning techniques to bypass true understanding and instead memorize course content to pass school exams. By doing this, she was able to complete her secondary education.
However, when it was time for Oladoyin to move on to university, she found it difficult getting past coursework for international university admissions, as they were based on understanding and application, and memorization “would no longer cut it.” After struggling to make her way through standardized university entrance exams, Oladoyin was accepted into a university but dropped out shortly after, as the learning styles she had relied on previously proved no match for the demands of higher education.
With no awareness of her disability or any support tailored to her needs, Oladoyin momentarily gave up her dreams of pursuing higher education and began a career in interior design. Her decision was met with much resistance from her parents who are themselves academics and see successfully completing higher education as the only viable path to a productive and fulfilled life. Although design was something she could see herself enjoying, she felt the inadequacy that came from knowing that her peers were successfully pursuing higher education while she was taking an alternative route.
“Am I dumb?” Oladoyin typed the question into her web browser one day. In milliseconds, the internet readily delivered to her a panoply of memes, quotes and articles and among them, one article struck her. It enabled her to finally identify a suspect that had for too long evaded her - dyslexia. “For the first time in my life, I finally felt understood, like I told the author what I had been feeling all those years and they put it into writing,” she described. Over the next months, Oladoyin devoted herself to researching dyslexia and other learning disabilities. Discovering that there had been over 100 years of research on learning disabilities, yet very little was known or done about it in Africa, she decided to become an advocate for neurodiverse learning disabilities. “I came to the realization that my learning difficulty, undiagnosed and without the appropriate support, almost cost me my future and my life. To think that other people lost their futures because of this - that is my driving force, that is my frustration and that is what keeps me going.”
To end the silence on neurodiversity, Oladoyin launched One Word Africa, an organization aimed at creating awareness of and providing support for neurodiverse learning disabilities. In its four years of operation, the organization has organized events to educate and create awareness about dyslexia and other learning disabilities. For instance, each month, it hosts Dyslexia Tribe, a monthly support group and mental therapy for dyslexic individuals. It has also published a Teacher Preparation guide as part of its efforts to train teachers to better cater to the needs of their students with learning disabilities. Despite the initial challenges in garnering financial support, as most donors preferred to fund organizations focusing on physical disabilities, Oladoyin is proud of the success the organization has had in increasing the conversation around learning disabilities in Nigeria. “It is exciting that people now talk about dyslexia and people who are dyslexic are not ashamed to say they are dyslexic. That is the biggest achievement for me.” One of the key facts that Oladoyin wants people to know is that they can achieve anything even if they have learning disabilities. In order to practice what she preached and convince others of their capabilities, she returned to university after a two-year hiatus to pursue a bachelor’s degree in psychology.
Some educational aspects of dyslexia, such as learning struggles, are relatively well understood, but “we often forget the psychological impacts of dyslexia on the person who is dyslexic, their parents, caregivers and teachers,'' Oladoyin noted. Drawing from her personal experience, she said that having such a disability can easily lead to self-doubt, low self-esteem and depression, and these psychological impacts “don’t go away.” By studying psychology, she learned to “see the person as an individual first, before whatever it [disability] is that they have,” and it has greatly helped her to design and implement solutions through One Word Africa.
Oladoyin pointed out that the bigger challenge facing people with learning disabilities in Nigeria is the system, “the educational policies, curriculums, the way they are designed.” She described the process of trying to achieve education reform as a “merry go round - sometimes you think you have to work from the top, but you realize that you need to start from the grassroots” and vice versa. She also explained that when government officials are not open to restructuring curricula, you decide to work with teachers. With training they become more knowledgeable about dyslexia and know how to teach their students in appropriate ways. However, teachers may be reluctant to apply those methods because they are trying to ensure that their students are prepared to pass exams administered by the government, which do not accommodate learning disabilities. She cited her own experience, saying that “I have learned in a way that I understand, but I have to keep that learning aside and replace it with a way that I can pass exams. The way the educational system has been designed is affecting how much of an impact we [educational organizations] can make.”
Oladoyin suggested that curriculums and policies be updated to meet the changing times and needs of students. “These changes should not be made by the same people who have been doing it for years,” but by people with in-depth and up-to-date knowledge who “understand disabilities and what is attainable.” She also called on governments to facilitate partnerships with civil society organizations, in order to provide teachers with adequate and holistic training that will help them become good educators for students with special learning needs.
Oladoyin wishes for a future where the opportunities for students with learning disabilities are not limited, a future where “the [educational] system allows for dyslexics to exist, allows them to be taught the way they can understand, on a level playing ground.”
You don’t ‘look’ disabled – it’s a phrase those living with invisible disability often hear. And shouldn’t. In this article we explore what it’s like to live with invisible disabilities in Australia, such as mental health conditions and chronic illnesses. And why people who have these conditions (also called non-visible disabilities, or NVDs) require and are very much entitled to accessible facilities.
Sergio Gerardo García Kabande
Conferencista y Especialista en Diversidad e Inclusión
You don’t ‘look’ disabled – invisible disabilities explained
You don’t look disabled…
Invisible disabilities are a wide range of conditions or impairments that can affect a person’s physical health, mental health and/or emotional functioning, but are not easily seen or observed. These disabilities include conditions such as chronic pain, chronic fatigue, fibromyalgia, chronic migraines, autoimmune disorders, learning disabilities, depression, anxiety, and other mental health conditions.
Here’s a list of what’s classified as an invisible disability.
While they may not be obvious to others because people who have them don’t necessarily require an assistive device, invisible disabilities are very real. They can significantly impact (and sometimes limit) the way someone goes about their daily activities.
Learn more about this from the video below:
While the effects of NVDs vary from person to person, most people experience some physical symptoms that affect their mobility. This is why they need – and are entitled – to use accessible facilities in Australia (more on this later).
While it’s important to recognise the physical manifestations of these conditions, it’s equally important to recognise the invisible side of these disabilities. Despite the fact that physical symptoms may not be present, the emotional, mental, and social impact of these conditions can be immense.
Uninformed society can react negatively towards people with NVDs when their mental health condition is not visible. People may not understand or believe that someone can be struggling with a disability if it’s not physically visible.
This can lead to feelings of isolation, frustration, and helplessness for those with NVDs. Not being understood can be damaging in a number of ways.
In addition, many people with NVDs are not eligible for certain forms of assistance or support. This can be especially true for those with learning disabilities, mental health disorders, and other conditions that aren’t easily observed or are deemed not debilitating enough on a daily basis to be eligible for funding support.
Without the proper support, these individuals may be unable to reach their full potential and/or may face additional barriers in their daily lives.
We should all try to recognise the challenges faced by those with invisible disabilities in Australia and offer support, compassion and understanding. By doing so, we can help create a more inclusive and understanding society.
Facing external and internalised stigma
You don’t look disabled…
Navigating the world with an invisible disability can be a difficult experience. For those with a physical disability, it can be easier to explain the need for accommodations or assistance. But for people with an invisible disability—such as a mental health condition, chronic illness, or learning disability—stigma and misunderstanding can make life even more challenging.
When it comes to NVDs, judgment and assumptions can be quick.
People with invisible disabilities in Australia may face judgment from family, friends, and even strangers. People often wrongly perceive individuals with disabilities as being lazy or unmotivated due to their condition. Instead, in reality, they’re facing challenges others can’t fully understand.
This stigma can make it difficult for people with invisible disabilities in Australia to open up or ask for help.
People may judge and overlook individuals with an invisible disability when providing certain services. If we do not acknowledge and address the requirement for support, we can easily exclude individuals with NVDs from crucial discussions.
People with an invisible disability like a mental health condition need support and understanding just as much as those with visible disabilities. Instead of judgment, there should be empathy. We should strive to create an environment where those with NVDs feel comfortable reaching out for help and support.
Being told you cheat the system because you don’t look disabled
You don’t look disabled…
If you live with an invisible disability, chances are you’ve been confronted about using accessible facilities in Australia. Our Invisible Disabilities Week Survey in 2021 found 74% of respondents with a disability parking permit had been verbally harassed or insulted for not ‘looking disabled’ when using a parking bay.
Regrettably, individuals who have invisible disabilities frequently face questioning when they use facilities designed to be accessible. In some cases, these situations can become aggressive and leave people feeling frustrated and, in some cases, frightened.
Despite having a valid permit and being entitled to using accessible facilities such as bathrooms and accessible seats on public transport, many people unfortunately think those with invisible disabilities are cheating the system based on how they look. Namely, because they don’t use a wheelchair. (Side note: check out this ‘How to Display a Disabled Parking Permit in Each State‘ article for more info on disability parking permits.)
Hence, when it comes to the use of accessible facilities, people with NVDs often don’t feel comfortable using them. They may feel hesitant asking for access when needed. They can even feel like they don’t deserve it.
This can be a result of internalised stigma or feeling like they don’t have the same right to access the same resources as those with visible disabilities.
More education and understanding is needed
This cycle has to stop. We need to better educate ourselves and each other for a more understanding and empathetic society. Surely we all want people living with NVPs to access what they need to without fear of retribution?
On that note, check out these articles if you’re keen on learning more about invisible disabilities:
It’s important to remember that invisible disabilities are just as real and valid as visible disabilities. Individuals with NVDs should be granted the same level of consideration to utilise facilities. Encouraging access to these amenities can have a substantial impact on the well-being of individuals with NVDs, ultimately enhancing their overall quality of life.
One way to ensure people with an invisible disability feel more comfortable using accessible facilities is to create a supportive environment. This can include things like making sure access to accessible facilities is easily available, providing clear signage with instructions – ideally, pointing out that people with all kinds of disability may use these facilities… Basically, making sure that the entire process is simplified and inclusive.
Creating an open and understanding dialogue about invisible disabilities is key, so people feel heard, respected and supported.
Living with an invisible disability? Get appropriate insurance
If you do have a pet (as emotional support or just because), protecting their health can take one stressor off your mind. And they’re our best friends, so why not? Check out Blue Badge pet insurance to find out how to cover your furkid well.
Plus, with a disability parking permit you could qualify for a discount on disability car insurance and pet insurance. Time to get a quote?
Dentro del ‘capacitismo’, una de las formas de discriminar a las personas con discapacidad, está el ‘cuerdismo’, que es discriminar desde una perspectiva de superioridad cuerda.
Persona: término derivado del latín personare, resonar, sonar con fuerza.
¿Qué nos hace realmente diferentes? Es evidente que todas las personas tenemos características particulares; sin embargo, ninguna persona resuena con más fuerza que otra.
Creo que lo que nos hace diferentes es la manera en la que percibimos. El problema es que casi todo el tiempo vamos por la vida creyendo que nuestra percepción no afecta a nadie más; al fin y al cabo es sólo nuestra.
Y como creemos que es algo al azar y que “lo normal” ya está establecido, dejamos que los criterios que formamos sobre las y los demás se vean influenciados por todo menos por nuestra propia humanidad; entonces, sin darnos cuenta, añadimos connotaciones negativas a las características que no hacen más que volvernos quienes somos.
Es ahí cuando se vuelve un problema, pues se nos olvida que la manera en la que percibimos es la manera en cómo actuamos y cómo nos relacionamos con las otras personas; de manera que en vez de crear opiniones que aporten, creamos prejuicios que obstaculizan.
Un prejuicio es un efecto, evaluación o actitud negativa hacia un grupo. Frecuentemente, los prejuicios se clasifican según la categoría social objeto de las generalizaciones; por ejemplo, el sexismo es el prejuicio hacia las diferencias entre mujeres y hombres; la homofobia es el prejuicio contra las personas homosexuales, y el antisemitismo es el prejuicio hacia las personas judías.
Aunque, hoy en día, ya se han evidenciado unos cuantos prejuicios; hay otros que aún pasan desapercibidos. Por ejemplo el CAPACITISMO, que es la discriminación ideológica y material ejercida contra personas con discapacidad.
Dentro del capacitismo, existen múltiples variantes como el audismo: la discriminación negativa o arbitraria o a la marginación vivida por las personas sordas; o el cuerdismo: los estereotipos, prejuicios y discriminación a las personas diagnosticadas por la psiquiatría o tachadas de locas, desde una perspectiva de superioridad cuerda.
Tenemos que ser conscientes de que los prejuicios dejan marca, en la autoestima de la otra persona y en lo correctamente aceptado. Por eso cada que los realizamos, nos estamos atando una soga al cuello pues estamos dando pie a la idea de que hay un modelo ideal del humano; un modelo en el que nadie va a lograr encajar. Para evitar que esto suceda, debemos recordar que la idealización no sirve de nada y que todas las personas resonamos en la misma sintonía, sólo hace falta prestar atención para lograr escucharnos.
La lucha de una madre porque aseguren a su hija con síndrome de Down que tiene una cardiopatía podría beneficiar a muchas más personas con discapacidad.
Les ha pasado o han escuchado de un caso: las aseguradoras de gastos médicos mayores constantemente rechazan cubrir a personas con discapacidad (pcd). Si no les rechazan imponen primas estratosféricas y “cláusulas de exclusión” que no cubren muchas cosas porque siguen considerando que la discapacidad es una enfermedad. No lo es. Se trata de una condición de vida.
Esto podría cambiar por una discusión que está por darse en los próximos meses en la Suprema Corte de Justicia de la Nación (SCJN) gracias a la mamá de una niña con síndrome de Down que interpuso un amparo ante una aseguradora que no quiere cubrir a su hija.
El 9 de agosto pasado, la ministra Margarita Ríos Farjat solicitó “atraer un caso” en la Primera Sala (hay dos en la SCJN). Es la Solicitud de Ejercicio de la Facultad de Atracción 294/2023, que podría ser histórica.
Ríos Farjat pidió, en lenguaje sencillo, que este máximo tribunal discuta este caso (que aún sigue en litigio) para que lo resuelva de una vez por todas. Su decisión es inapelable para las autoridades judiciales. En el 2021, esta misma ministra presentó un caso similar: el de Gabriel, un bebé de casi 2 años, también con síndrome de Down, a quien una aseguradora se negó a cubrir como escribimos en “Discapacidad no significa enfermedad: no es razón para negar un seguro médico”.
Pero esta vez es diferente porque, al reformarse el Poder Judicial en el 2021, las sentencias que ahora emite la Corte al discutirlas y fallarlas por mayoría calificada crean inmediata jurisprudencia, no sólo precedentes o tesis. Explico: un precedente es importante (todo lo que decide la SCJN lo toman en cuenta los distintos tribunales para tomar decisiones) pero se necesitaban cinco casos para crear jurisprudencia y luego, publicar esa misma. Luego quién sabe porqué los ministros y ministras olvidaban este importante paso. La jurisprudencia es un criterio obligatorio a seguir. Y tras la reforma, basta un caso.
De ahí la importancia de que Ríos Farjat haya propuesto discutir la lucha de esta madre por el derecho a la salud de su hija. Y mejor: la Primera Sala, por unanimidad, estuvo de acuerdo.
La historia: cómo llegó el caso a la SCJN
No conocemos su nombre aún. Pero sabemos que una madre promovió un juicio de amparo en contra de una aseguradora por excluir de la cobertura de su seguro de gastos médicos mayores a su hija que vive con síndrome de Down y tiene una cardiopatía congénita (como muchas personas con síndrome de Down presentan).
Un juez lo discutió y falló a favor de la mamá: consideró que la aseguradora la discriminó y le dio el amparo. Pero además y aquí entra lo interesante: este mismo juez extendió este amparo a los actos de la Comisión Nacional de Seguros y Fianzas (CNSF) y la Comisión Nacional para la Protección y Defensa de los Usuarios de Servicios Financieros (Condusef) que estuvieron en desacuerdo y entonces interpusieron un recurso de revisión.
En lenguaje sencillo: el juez le dijo a la CNSF y Condusef que no están haciendo esto. Y entonces las instancias de gobierno (porque ambas dependen de la secretaría de Hacienda) pidieron que otro juez o jueza, con mayor autoridad en el Poder Judicial, lo revisara. Y así llegó a la Corte.
¿Qué podría pasar?
Hasta donde me han contado, la SCJN, cuando discuta este caso, que puede ser en un par de meses planea entrar “al fondo”.
Dos cosas: discutir si esta aseguradora discriminó por motivos de discapacidad a la niña, lo cual es importantísimo. Y segunda, sobre si puede considerarse a las aseguradores y a la CNS una “autoridad responsable” en la emisión de pólizas de gastos médicos mayores al excluir coberturas basadas en discriminación por discapacidad sin cobrar de más, es decir, las famosas “sobreprimas”.
Si las dos respuestas son sí, la Corte podría obligar a la CNS y a las aseguradoras a que no tengan cláusulas de exclusión.
En el Artículo 1o. de nuestra Constitución está prohibida la discriminación por muchas causas, entre ellas la discapacidad. Además, la Convención sobre los derechos humanos de las personas con discapacidad (CDPD) , que nuestro país debe cumplir, tiene todo un Artículo sobre Salud.
El Artículo 25, sobre el tema, inicia así:
“Los Estados Partes reconocen que las personas con discapacidad tienen derecho a gozar del más alto nivel posible de salud sin discriminación por motivos de discapacidad”
Y luego el inicio del inciso e) habla sobre seguros en particular:
“e) Prohibirán la discriminación contra las personas con discapacidad en la prestación de seguros de salud y de vida cuando éstos estén permitidos en la legislación nacional, y velarán por que esos seguros se presten de manera justa y razonable”.
La SCJN planea discutir todo esto con base en el “modelo social” de la discapacidad que es la base de la CDPD. ¿Esto que quiere decir? En una definición muy sencilla esta Convención considera que la discapacidad se da -ojo- en la interacción de alguna persona que tiene una deficiencia y las barreras que pone la sociedad, en este caso las aseguradoras. En ningún momento, en ninguna línea utiliza la Convención la palabra “enfermedad”.
Seguiremos de cerca este caso y todo lo que podría provocar. Ministras y ministros: tienen ustedes en sus manos un caso histórico.
¿Tu conoces algún caso donde una aseguradora haya discriminado por motivos de discapacidad? ¡Cuéntanos a través de nuestras redes sociales!