Allison Douglas won three, yes THREE, Gold Medals in her equestrian competitions. The Epilepsy Foundation of Greater Los Angeles at EndEpilepsy.org and Epilepsy Foundation join in congratulating her.
However, we regret to report that Allison was not able to stay with her team at all during the World Games. Advocacy efforts are still underway as we continue to object to the way she was discriminated against, and we want to ensure this never happens again to another athlete with epilepsy who qualifies to participate in Special Olympics World Games.
The Epilepsy Foundation of Greater Los Angeles at EndEpilepsy.org congratulates Allison Douglas on her Gold Medal finish in today’s Equestrian competition. This was the first of three events for Douglas at the Games.
We are cheering for Allison and on all the athletes in the Special Olympics with special interest in the athletes who also live with epilepsy. EndEpilepsy.org encourages competitors with epilepsy and their families to share their stories via our End Epilepsy Facebook page and to tweet us @EndEpilepsy with results and pictures.
We are all thrilled with Douglas’ performance and believe she’s demonstrating tremendous courage competing under the circumstances.
“What Allison did to win the gold medal is remarkable for anyone, but her success is even more outstanding considering the “un-special” treatment they have received at the World Games!” said Susan Pietsch-Escueta, director of the Epilepsy Foundation of Greater Los Angeles.
“We continue to be disturbed about the reports from Allison’s father — about her being separated from her team and missing most of the friendship-building experiences that are so much a part of the World Games. In advocating for Allison, we continue to welcome any opportunity to provide information about epilepsy to the decision-makers in the Special Olympics World Games, and we urge them to get correct information about Allison’s epilepsy directly from her parents and doctor. We have also asked Dr. Christianne Heck, the director of the Epilepsy Center at LAC+USC Medical Center and a member of our advisory board, to be on standby and she is ready and eager to talk to anyone at Special Olympics about this matter. And we are glad to report that the national Epilepsy Foundation has joined the Epilepsy Foundation of Greater Los Angeles in advocating for and cheering for Allison. We must remain active in our efforts if a member of our epilepsy community involved in the Special Olympics World Games is being treated differently and reports feeling discriminated against because of epilepsy and seizures.”
Phil Gattone, the President & CEO of the Epilepsy Foundation, joins our advocacy efforts on behalf of Allison Douglas and wrote, “The Epilepsy Foundation stands with our leaders at the Epilepsy Foundation of Greater Los Angeles, and this very courageous athlete, Allison Douglas, who has earned the right to participate fully in every aspect of the Special Olympics World Games. Her example has and will continue to inspire millions of individuals who have recurring seizures, and we urge the leadership of Special Olympics to not create the types of barriers for this young lady that its founder, Eunice Shriver, dedicated her life to remove.”
As of today, the Epilepsy Foundation of Greater Los Angeles is still waiting for confirmation from Allen Douglas, Allison’s father, that Allison is being fully included with her team in all activities and that the remaining housing and travel issues are resolved. We will keep updating the status and continue our advocacy efforts.
Editor’s Note: Douglas has two other events for the Games; Trail Class on Friday and Team Relay on Saturday. EndEpilepsy.org will keep you informed and updated on her performance and welcomes all other athletes with epilepsy to also Share Your Story with us.
The Epilepsy Foundation of Greater Los Angeles (EndEpilepsy.org) is proud to report that, because of the outreach and advocacy work of her parents and of our staff, trustees and other volunteers, Allison Douglas was able to walk in with her team for the Opening Ceremonies of the Special Olympic World Games in Los Angeles on Saturday night, July 25.
EndEpilepsy.org obtained this picture of Allison inside the LA Coliseum, walking with her fellow athletes, representing the epilepsy community and athletes everywhere who are competing despite their intellectual disabilities.
However, the story is not yet over.
For those who may be new to this story, let us share the background and update you at the same time. We at EndEpilepsy.org joined the advocacy effort when we heard from Allison’s parents and read this story online:
According to that High Points News article at hpenews.com, written by Jimmy Tomlin, Mr. Chris Hahn, head of delegation for Special Olympics USA, was apparently asked about the possibility of having a volunteer walk with Allison so she could participate in the Opening Ceremonies. In response, Mr. Hahn is reported as saying that “…volunteers might not be comfortable dealing with a seizure,” and he said, “Are we willing to ask individuals who are volunteers to do something that is outside their realm of knowledge and expertise?”
In response, the Epilepsy Foundation of Greater Los Angeles is surprised to learn that volunteers for the Special Olympics World Games have not been trained in how to recognize and administer seizure first-aid. We would have assumed that training in seizure first-aid would be part of their basic training. Now that we know that is not the case, we have offered and we continue to offer to provide seizure first-aid training. However, we are deeply disappointed that, even within the ramparts of safety and inclusion, which we assume surround the Special Olympics, we still find evidence of people with epilepsy being treated differently. It is unfortunate that even within such an esteemed organization we still encounter individuals against whom we have to fight in order to get fair treatment, bring down barriers, and combat ignorance about epilepsy.
Again, in the article, Mr. Hahn is quoted as saying that “The attempt was to reduce her stress and fatigue,” as justification for making her be a spectator instead of a team member in the Opening Ceremonies. The parents report that the organizers have separated her from her team and are making them transport her to the various venues and events. We at EndEpilepsy.org do not see any evidence that the organizers are considering how their apparent segregation and different treatment of Allison is tacitly unfair and may also cause her stress and anxiety. Not only are their decisions ensuring Allison does not have the full World Game experience, but the added stress may also negatively affect her emotions and focus and, thus, her ability to compete.
In the article there seems to be disagreement about the length of her seizures. However, the family and we have not seen any evidence that the coaches or organizers have contacted Allison’s neurologist to get specific information about her seizures. They state that the seizures are longer than Allison’s parents say they are, and we at the Epilepsy Foundation of Greater Los Angeles are concerned that they may be confusing the actual seizure with the post-ictal state. Most people who know about epilepsy know that after some types of seizure there is a period of confusion or post-ictal state that is not usually part of the actual seizure. Epilepsy is very individual and every effort should have been made to work with Allison’s parents and doctor to find out what accommodations were appropriate for her type of epilepsy and seizures. Thus, the Epilepsy Foundation of Greater Los Angeles continues to decry decisions that were made and continue to be made by coaches and organizers that do not take into account Allison and her seizures and her doctor’s report, but are instead appear to be based on ignorance about seizures/epilepsies and specifically about Allison’s seizures.
This updated news report by Jimmy Tomlin at hpenews.com does report that Allison should be able to walk at the Opening Ceremonies, but it fails to mention that there were still conditions (no seizures) and barriers (provide a wheelchair) put upon the athlete and family .
The family reports receiving text messages as late as this past Saturday afternoon asking if they had found and were providing a wheelchair in order for Allison to be able to walk in the Opening Ceremonies. This request was made even though Allison has never been medically advised to have a wheelchair. Thus, it would seem that the organizers made a decision that made them “feel more comfortable” rather than taking into account what the athlete needed or felt.
“Getting to see Allison walk at the Opening Ceremonies and proudly represent herself, her family and the epilepsy community across the world is a great honor and we are so proud of her,” Pietsch-Escueta said. We do not know what changed the tide – whether it was her parents’ advocacy, or our staff member Nathan Jones’ intervention, or the general counsel of the Special Olympics. But somehow it was confirmed that Allison would and should walk in the Open Ceremonies on Saturday night at the Los Angeles Coliseum. Wiser minds prevailed and ensured Allison was treated just like her other team mates – at least for the Opening Ceremonies.
We are relieved that what could have been a very upsetting story about the World Games’ Opening Ceremonies is turning into a positive story about the power of sharing your story, advocacy, persistence, and standing up against ignorance and discrimination — even in places where least expected like the Special Olympics.
However, as mentioned above, the story isn’t over. There are still other issues to be resolved as Allison continues to be treated differently from other members of the team. We at EndEpilepsy.org are continuing to advocate for her and are offering to meet with Mr. Chris Hahn. We will continue to update the community about Allison and her equestrian competitions during the Games. We and Allison’s family want to thank everyone who participated in the #LetAllisonWalk movement.