- Introduction
- Section 1: Create and develop an inclusive policy
- Section 2: Changing managerial practices
- Section 3: Changing employee attitudes
- Concluding remarks
- Quiz
Testimony from Amélie
I was 26 when I had my first crisis. I’d just been taken on as an account manager in an accountancy firm. I couldn’t stand the screens any more, so I had to stop working. Today, I’m recognised as disabled. I can’t drive or do certain jobs. The loss of mobility leads to isolation; that’s the hardest part. I don’t meet anyone. I’d like to go back to work. I don’t want pity, just a job that can adapt[1]
[1] Delatronchette, L. (2022, 14 février) – “L’épilepsie est une maladie invisible mais vraiment handicapante” Par Ouest France. https://www.ouest-france.fr/sante/temoignage-l-epilepsie-est-une-maladie-invisible-mais-vraiment-handicapante-7e5f2744-8b29-11ec-a1f9-dd16676602bc
Par Ouest France. https://www.ouest-france.fr/sante/temoignage-l-epilepsie-est-une-maladie-invisible-mais-vraiment-handicapante-7e5f2744-8b29-11ec-a1f9-dd16676602bc
Creating and developing an inclusion policy within an organization requires a clear commitment from management and the implementation of appropriate measures. This goal must be align with the company’s overall mission and values. Here are the main points.
- Continuous efforts to combat direct or indirect discrimination : there should be a zero tolerance policy toward the display of any potentially stigmatizing or discriminatory behavior. It is also necessary to establish clear procedures for reporting discrimination, harassment, or other violations of inclusive policies. Particular attention must be paid to decisions concerning hiring, promotion, and compensation practices.
- Implementing reasonable accommodations, as required by law, when recommended for affected employees : a lot of the time a PwE does not need accommodations at work. When there is a specific need, in most cases, a doctor will provide a list of accommodations to create an environment that will be safe and comfortable for the PwE. The employer needs to meet with the employee to discuss the specifics and to ensure that nothing is overlooked. In some cases, the accommodation will be minor, like adapting the work schedule to allow time for rest leading to decreased risk of seizures. Regular meetings need to be scheduled to verify that everything is in order and that no further adjustments need to be made. See module 2.2 about “Accommodating people with epilepsy in business processes and activities” for more details on this subject.
- Implementing a safety policy that considers the health and well-being of all employees, including the needs of people with epilepsy : the company’s safety policy must include specific measures like an Acute Seizure Action Plan (ASAP) in the event of a seizure. As with other safety measures implemented in the company, employees need to be informed and trained to behave appropriately. See module 2.2 about “Accommodating people with epilepsy in business processes and activities” for more details on this subject. Guaranteeing employee safety is an employer’s obligation, but it is also necessary to go beyond this, by ensuring the health and well-being of employees. Here are a few important measures:
- Ensure that employees have access to comprehensive health insurance, including coverage for epilepsy.
- Provide employers with support and understanding for necessary medical appointments, for example by arranging work schedules.
- Have a clear policy on sickness absence, and, in particular, for epilepsy and have some supportive measures to reintegrate employees post-absence.
- A company must also pay particular attention to the emotional and social well-being and mental health of individuals, especially those with epilepsy.
- Implementing solutions to facilitate access to the company’s site : Within the framework of sustainable development and corporate social responsibility, many companies are looking for solutions so that employees can easily access their workplace. Given the driving restrictions that apply to people with epilepsy, this is a particularly important question. Encourage the use of public transport through subsidies for employees who use public transportation. Another solution may be to partner with local transport authorities to offer free or reduced-price transport cards. But when the company is poorly served by public transport, another solution may be to establish carpooling programs. For large companies, setting up company shuttles between the main transport hubs and the workplace. Another solution that could facilitate the professional integration of people with epilepsy is to set up teleworking policies, taking into account the specific needs and even wishes of each individual.
- Creating functions or roles to promote integration :
To create an inclusive environment for employees with epilepsy, it is critical to establish a comprehensive support system that includes key stakeholders and resources. The Human Resources Department is the department most often concerned by the implementation of an inclusion policy, even if it is decided at the level of the Directorate General. Many companies also choose to appoint a disability manager to oversee the inclusion policy. His role is often crucial in supporting employees with epilepsy. A complementary measure may be the formation of a Diversity and Inclusion Committee composed of employees from various levels and backgrounds within the organization to provide valuable information and recommendations for the development and development of an inclusion policy. Finally, collaboration with external partners such as health professionals, disability advocates and epilepsy organizations is essential to stay informed about best practices and new developments. In addition, partnering with epilepsy advocacy groups can provide access to educational materials, seminars and expert consultations, allowing for an informed and current approach to supporting employees with epilepsy and serving as a model for accommodating other disabilities. Offering peer support groups or employee resource groups for people with epilepsy can provide cognitive support, professional tutoring, and opportunities to communicate with others with epilepsy or with peer support workers. - Monitor and evaluate progress of inclusion policy : to ensure the effectiveness of an inclusion policy, it is essential to monitor and evaluate its progress regularly. You need to start by setting specific, measurable goals for diversity and inclusion within the company. The effectiveness of existing adaptation policies and measures should be regularly reviewed and evaluated, identifying any areas that might inadvertently exclude or disadvantage certain groups. An ongoing assessment process uses surveys, focus groups and interviews with employees to gather feedback on their experiences and identify gaps in inclusion. This also applies to employees with epilepsy by seeking their feedback and ensuring that their needs are met.
Creating and developing an inclusive policy, especially for employees with epilepsy, requires the following areas of action to be taken into account: continuous efforts to combat direct or indirect discrimination ; implementing reasonable accommodations when recommended for affected employees ; implementing a safety policy that considers the health and well-being of all employees, including the needs of people with epilepsy ; implementing solutions to facilitate access to the company’s site ; creating functions or roles to promote integration ; monitor and evaluate progress of inclusion policy.
Testimony from Anna-Louise
Epilepsy isn’t just about seizures. It’s also when you have to take your medication, make arrangements for medical appointments, suffer memory lapses, a flash of light that bothers you because of photosensitivity, excessive dizziness, a bad night’s sleep that puts you at risk of having a seizure, a tremor in your arm or eye that twitches, not being able to get to a place because public transport doesn’t go there, etc.
I’d like to raise awareness of epilepsy and get people talking about it without all the taboos that surround it, so that all people with epilepsy can live a little better with their disability. So that we don’t have to hide our illness for fear of the reaction of those close to us and those not so close, so that we don’t have the fear of having a seizure in public because of the way others look at us, or quite simply because of the risk to our safety, because the simple gestures that can protect us are not taught. I would also like to see the old beliefs about epilepsy disappear for good, such as possession by evil spirits or the devil, madness… all the negative things that have no place.[2]
[2] Lavigne, A. (2021, 29 octobre). « Je suis épileptique et voici ce que je voudrais que vous sachiez sur cette maladie » – BLOG. Le HuffPost. https://www.huffingtonpost.fr/life/article/je-suis-epileptique-et-voici-ce-que-je-voudrais-que-vous-sachiez-sur-cette-maladie-blog_188321.html
Reflective exercise
Taking up the main points to be followed to create and develop an inclusive policy in your organization, describe precisely the concrete actions you could take for each of the points, indicating for each action the people involved and a timetable.
- Ongoing efforts to combat direct and indirect discrimination
- Implement reasonable accommodation, as required by law, where recommended for the employees concerned.
- Implement a safety policy that takes into account the health and well-being of all employees, including the needs of people with epilepsy.
- Implement solutions to facilitate access to the company site
- Create functions or roles to promote integration
- Monitor and evaluate the progress of an inclusion policy