The museum has apologized to her and her family, but the staff members were struggling to deal with the fine carpet and the need to provide access to a young girl who loves to learn. Clearly, there is a learning curve that needs to be pursued on both sides of this issue.
The family had been in Savannah for the weekend when they were told that Lexi could not bring her wheelchair into the museum. The museum offered her a wheelchair she could use, but it did not have the straps Lexi needed. Lexi experiences Kernicterus, which is a bilirubin-induced brain dysfunction that finds her with physical disabilities.
Kernicterus is a rare form of neurological disability that occurs in some newborns with severe jaundice. It is caused by very high levels of bilirubin, which is a yellow pigment that is created in a person's body during the usual recycling of old red blood cells. High levels of bilirubin in a person's body may cause their skin to appear yellow in color, something that is referred to as, 'jaundice.'
In some instances when there are extremely high levels of bilirubin in a person's body, or a baby is very ill, the substance moves out of their blood and collects in their brain tissue. When this occurs it may lead to serious neurological complications, to include hearing loss and brain damage. Kernicterus often develops during the first weeks of a person's life, although it might be seen up until the third week.
Newborns with Rh hemolytic disease that might lead to hydrops fetalis are also at high risk for severe jaundice that leads to the condition. Kernicterus; however, has also been experienced by babies who are apparently healthy. There are a number of symptoms associated with Kernicterus, depending upon the stage.
In the early stage of Kernicterus, an infant may experience:
In the mid stage of Kernicterus, an infant might experience:
In the late stage of Kernicterus, an infant may experience full neurological syndrome and the follow symptoms:
Lexi, the Museum, the Carpet and Those Dirty Wheels
Lexi and her family had done research online concerning the museum and were aware that it might be difficult for her to visit the museum because it is located in a historic house. Lexi's father said the person at the front desk of the museum told him they couldn't bring in her wheelchair because it would get the carpets dirty. I am left to wonder if the museum has ever heard of Scotchgard before. The museum instead offered Lexi a wheelchair to use that wasn't suited for the disability she experiences.
Lexi could not use the wheelchair the museum owns because she is unable to sit up on her own and it did not have the straps she needs. The museum offered to have Lexi sit outside of the museum and instead watch a video on a tiny little television while the rest of her family enjoyed the museum. Some kind of trade-off.
The museum states that with prior notice it can make a, 'docent,' available to people with disabilities that provides an introduction to their collection, house and garden. It says it will set up a video presentation of their collection in the pavilion or classroom, as well as introduce display items and make publications or additional videos available. The museum does not have an elevator or a lift.
Lexi's mother was apparently not too pleased with the museum's offerings or treatment of her daughter, and who can blame her? She stated, "They really need to train their staff. They really do. It's a significant error and significant departure in the current thinking on disability access."
Personally, I can't help but wonder if Clorox Wipes might have solved this issue. After being there for a friend who uses a power wheelchair, these wipes do wonders for dirty wheelchair wheels. Scotchgard on the museum's carpets and some Clorox Wipes might have solved the entire issue, with the exception of the lack of an elevator or lift in the museum.
It was exceptionally rude of the museum to deny access to Lexi, in my opinion; carpets can be cleaned. The mission of any museum anywhere is education and the dissemination of information with the goal of sharing that information with the public in particular - to include children with disabilities. To the museum I can only say, 'How Rude!'
Jaundice and Kernicterus
Kernicterus is a form of brain damage caused by excessive jaundice. The substance which causes jaundice, bilirubin, is so high that it can move out of the blood into brain tissue.
Facts about Jaundice and Kernicterus
Jaundice is the yellow color seen in the skin of many newborns. Jaundice happens when a chemical called bilirubin builds up in the baby's blood.
Museum issues apology after disabled girl denied access
A Savannah maritime museum has issued an apology after a Charlotte family says their disabled daughter was denied access because her wheelchair would "get the carpets dirty."