Steps on a disability civil rights journey – Haben Girma

Intro

I recently read an excellent autobiography “Haben: The Deafblind woman who conquered Harvard Law” (available in various formats including audio read by Haben herself).

I was struck by Haben Girma’s journey of experiencing and challenging an instance of ongoing discrimination in chapter 18 which felt directly relevant to Reasonable Access’s aim of supporting and empowering disabled people to assert and enforce disability access rights.

If you plan to read the book, you may wish to delay reading further to avoid spoilers.

Haben encounters inaccessible menus barrier

Haben describes studying for her undergraduate degree at a small liberal arts college. All her academic materials are converted to electronic and/or braille format by helpful and friendly student services staff. Students have to live at campus accommodation, and pay for a meal plan with food provided at the campus cafeteria. The cafeteria has around 5 serving stations each serving a different range of food.

Students are expected to know which food station to visit by reading the printed menus posted up on the walls each day. As Haben is blind, print menus were useless to her. Haben tried asking serving staff what was on offer but could not hear even shouted replies as the cafeteria was so noisy. Haben tried creative solutions like using her sense of smell to guess what was on offer or relied on her residual vision to follow the biggest queue. Lack of access to the menus resulted in Haben only finding what she had been served when she tried to eat it – not so good for a vegetarian!

Haben experiences mixed emotions about being prevented from choosing her food. Having to pay for a meal plan but not be able to choose the food made Haben feel frustrated and angry as she could not take her custom elsewhere. But Haben also felt guilty because she did at least have plenty of food, something her own mother did not have when walking hundreds of miles to escape the war in Eritrea.

Haben asks for access to be provided

With the support of a friend, Haben decided to ask the cafeteria manager to provide her with access to the menus. Initially the only option offered was to have staff read the menu aloud, requiring Haben to explain that she was also deaf so wouldn’t be able to hear this. Eventually the manager agreed to send the text of the typed menus to Haben by email – which she could read using her digital braille reader.

On the rare occasions the menus were emailed to Haben, she was empowered to go straight to the correct serving station and ask for nice vegetarian meals without any stress or difficulty. However, most of the time, menus were not sent.

Haben asks for access again

Haben spoke to the cafeteria manager again, this time he was much more negative, making excuses about staff being too busy. Haben had to remind the manager why staff reading the menus to her was ineffective and inappropriate, twice. The meeting ended by the manager walking away from Haben while grudgingly saying he would talk to his staff.

Menus were still not sent to Haben and she continued to have mixed feelings. Her friend is a great ally by supporting Haben whatever she chooses to do, but also points out that he gets to choose his food and sending an email in 2007 is not hard!

Haben makes first written challenge

Haben decides to send the cafeteria manager an email asking why menu provision is so sporadic. She gets a reply which is very negative, makes several excuses, inflates the amount of work needed, claims emailed menus is not a service they are contracted to provide, they never promised to email menus and are not specialists in providing for people with “special needs”.

All of these excuses will be very familiar to disabled people who have tried to assert our rights

Haben discovers the law

At this point it becomes clear Student Services have also been asking for menus for Haben and also been ignored. Haben explains to her friend (who is non-disabled) that this kind of refusal to provide adjustments is very common as organisations see access as optional or ‘charitable’. Haben is inspired to carry out some research when her friends asks her about the law, which she does not know much about.

Haben has protection under the Americans with Disabilities Act (ADA) which incidentally influenced the format of our DDA and Equality Act. Their ‘reasonable accommodations’ is similar to our ‘reasonable adjustments’.

While Haben finds some of the legal information confusing, she feels confident enough to reference the ADA in a more formal complaint email to the cafeteria manager. Haben starts by saying the cafeteria has obligations under the ADA, she re-discloses her need for emailed menus as she cannot read print or hear menus read aloud to her. Haben is polite throughout but ends by saying if the cafeteria continue not to provide her with menus, she will take legal action.

Cunningly, Haben adds student services, senior university and cafeteria management staff into the CC field before sending it. Haben worries that she did not know how to take legal action, did not know any disability rights experts and could not afford professional legal advice (very familiar to us too!).

Outcome

A few days later Haben receives an apology (and free cookies!) from a clearly abashed cafeteria manager and a promise that the menus will be emailed to her every day.

The narrative then skips to a year later where menus are emailed to Haben every day. She knows what her choices are and can easily choose enjoyable vegetarian food in the cafeteria. Another blind student has joined the college and Haben finds out he also receives emailed menus. He explains to Haven that even with good hearing, he cannot hear a menu being read aloud as cafeterias are so noisy. Haben realises by asserting her own rights, others have benefited which is part of her inspiration to go to law school and specialise in disability rights law.

Conclusion

While this story has almost certainly been tidied up for narrative reasons, it is in many ways a very classic experience of challenging disability discrimination. I recognised the experience of repeatedly having to explain why the barrier is a barrier and why an inappropriate adjustment is unsuitable. The manager changing from quite-friendly to increasingly negative is also familiar. It is also true, that a legalistic complaint, copied to the right senior or influential people can sometimes achieve what no amount of polite informal requests will.

I strongly recommend you read or listen to this book for yourself as it is very honest, interesting, funny and demonstrates some great use of assistive technologies.