♫...I'm not sure all these people understand. It's not like years ago, The fear of getting caught, Of recklessness and water...♫

There has been much talk over the last few months about the irony of Atos doing the computing for next year’s Paralympics. People thought things were getting even odder when Atos founder Bernard Bourigeaud joined the International Paralympic Committee (IPC) board.

Based on my experience I don’t think it’s that bizarre at all. In fact, again in my experience, Atos and the IPC have more uniting them than separating them.

As a teenager my dream was to be a Paralympic swimmer. All disabled athletes are classified by medical personnel as to their level of impairment. So all prospective Paralympians have had to undergo an Atos-esque assessment before they can compete.

All sports have different classification systems; some like athletics have impairment-specific systems (so people with cerebral palsy compete against people with cerebral palsy and people with dwarfism compete against people with dwarfism... and so on) while other sports like basketball have a pan-impairment system. Swimming uses the latter style system.

The classification system used in swimming for people with physical impairments ranges from 1 to 10, where 1 is the most severely impaired, and 10 is the least severely impaired. A typical 10 will only be missing one hand or less than half a leg. A typical 1 will have almost no use of any part of their body.

The system is designed so that in theory you compete against people of a similar level of impairment to yourself. So in an S6 race you might find a couple of paraplegics, a couple of people with no arms, a couple of people with hemiplegic CP and a couple of people with dwarfism. Wildly different diagnoses, but considered to be of the same *severity* of impairment.

People with a physical impairment will have 3 different classes - an S class for freestyle, backstroke and butterfly; an SB class for breaststroke and an SM class for individual medley. This is because free, back and fly rely mostly on the arms for propulsion but breaststroke relies more on the legs. So while a paraplegic and someone with no arms will be able to race as equals on free, back and fly; the person with no arms would have a massive advantage over a paraplegic in a breaststroke race. So typically the paraplegic will be an S6 SB5 SM6, while the person with no arms will be an S6 SB7 SM6. Yes, this does mean that the person with no arms still has an advantage in the IM race; the system is far from perfect.

After years of training I made it into the GB team for the Europeans’ in Badajoz in '97. I went out to Spain as an S6 SB5 SM6, and came home as an S9 SB9 SM9! This was because the classifiers/the system is only used to dealing with "common" impairments. Osteogenesis imperfecta is rare. They ignored not just one, but four aspects of my impairment when assessing me, and decided that other than 2 duff elbows, one duff knee and one duff ankle I was almost able-bodied. A quick glance at me can tell you that I'm quite clearly much more severely impaired than that!

Osteogenesis is a form of dwarfism. Despite being sent medical evidence from experts the IPC classifiers refused to accept that fact. There was actually a swimmer around at the same time who had achondroplasia – a much more common form of dwarfism – that had had her limbs surgically lengthened and was taller than me. Despite being classified on her height alone, and being taller than me she was an S8 (so lower than me) because they took her dwarfism into consideration; but not mine.

They refuse to believe that hypermobility is impairing. They assess each joint and award it a point score. A low score means it has very little movement; a high score means full range of movement. The IPC refuse to start deducting points again when your joints go far beyond normal range of motion. Instead they just say “aren’t you lucky to be so flexible?” So my inability to keep my fingers together whilst swimming (very important for your hands functioning as paddles) because the joints just aren’t strong enough to resist the force of the water was disregarded. The only joints of mine they didn’t give full points to were my elbows, left knee and left ankle.

You would think that my joints with restricted motion from being repeatedly broken would at least knock off some points, right? Wrong. Like I said, they only accepted I had 4 impaired joints. They totally disregarded the fact that my wrists have been smashed up too.

Because collagen (the protein not formed correctly in OI) is also found in muscles people with OI have poor muscle tone. We can strengthen our muscles with exercise but we’ll always be starting from a lower baseline. At the time of that classification assessment in 97 I was training 7 times a week. As a result my muscles were roughly equivalent in strength to a non-disabled person who does no exercise at all. They didn’t care that I worked my arse off to have the equivalent strength to a lazy person with standard muscle tone; they just marked me down as being of “normal” strength, refusing to accept osteogenesis affects muscles.

The International Paralympic Committee can call you up for reclassification any time they want, but you can only appeal once. I had my appeal in 1999. They ignored medical evidence, consultant's letters, etc and decided that I was still an S9 (though my SB class got reduced to SB8, it didn’t matter because I sucked at breaststroke so never did it).

My one appeal was used up. That was that. I quit swimming in 2000. In recent years I've joined a Masters team, but because of my health I don't get to train that often. Between my stomach, a broken rib and a prolonged infection I haven't been for a swim since July. I've gone training with little fractures many times (in fact the last time I went in July I had a cracked metacarpal) but the rib was a bit too bad; getting out of breath was pretty painful.

For people familiar with reading about experiences of Atos assessments it all sounds fairly familiar, doesn’t it? Ignoring symptoms in a medical assessment in order to find people less impaired than they actually are. Though, actually, I’ve personally found Atos to be fairer: 2 IPC assessments and they both claimed I was less impaired than I am. I’ve only had one Atos assessment thus far and that did, correctly, find me unfit for work. And within the benefits system there are several steps of appeal, the IPC only let you have one.

(In case you’re thinking “how can she be unfit for work if she used to train that much?” I would direct you to many other posts on my blog where I talk about how I’ve always had my mobility impairment but until about 2005 I was “healthy”; I was free from illness. I just had a dodgy musculoskeletal system. But now I have a ton of unrelated health problems rendering me incapable of working.)

Atos are known for making assessments on how a person looks: People with invisible impairments tend to fare worse in the assessment process than people with conditions that can be seen. The IPC employ the same tactic: Part of the assessment process is that they watch you swim. Sounds sensible when they’re assessing how your impairment affects your ability to swim, right? My problem was that I’m a good swimmer; I trained hard and developed excellent front crawl technique. I was penalised for not looking particularly impaired when swimming front crawl, regardless of how impaired I actually was.

Both bodies also are more forgiving for people with better known/understood impairments. If you have cerebral palsy, a spinal cord injury, a missing limb or achondroplasia the IPC assessment criteria accommodates you. Likewise Atos are usually more understanding of people with better known conditions (like cancer) than people with diagnoses that aren't quite so well understood (like ME).

Of course, when the IPC find you less impaired than you actually are it means that you lose your dreams. When Atos come to the same conclusion you can lose a lot more.

Edit August 2023: I said in paragrph 6 of this post "in an S6 race you might find a couple of paraplegics, a couple of people with no arms, a couple of people with hemiplegic CP and a couple of people with dwarfism. And that was true at the time I wrote it in 2011. However, in 2018 the IPC changed some of the the classification system's regulations, and one of the changes meant that all of the double above elbow amputees were moved from the S6 class down one into the S5 class. So you will no longer find anyone with no arms in an S6 race.

I would say "I'm happy to make this clarification", except it's been fucking carnage for the lifelong S5s; and now all medal podia for S5 races are completely dominated by the ex-S6 double above elbow amputees. I watched the heats for the men's S5 50m backstroke at the World Championships in Manchester yesterday morning, and I did not notice even one single man with any other impairment in either heat; because the ex-S6's now completely dominate the classification, it looked like no-one with CP, or a spinal cord injury, etc, decided it was worth bothering entering. In the women's heats there were a couple of swimmers with impairments like CP, who have arms, but it was all the double above elbow amputees who completely dominated. I missed the final of both races because I was out running an errand, but I tuned into the live stream just in time to catch the medal ceremonies for both S5 backstroke races. Obviously all the men's medal winners were double above elbow amputees, because it appears no-one with any other impairment even bothered to enter since the takeover of the classification by those moved down en masse from S6. While in the women's race - where there had been a couple of entrants with arms, even though they must've known they didn't have a chance against the ex-S6s - it was also the case that there was not one single arm to be found on the medal podium.

Having experienced what it feels like to be on the receiving end of unjust decisions by the IPC, I can completely understand why all the other swimmers in the S5 classification (some who may be in their 30s who've been in the S5 class since they started competing in their teens) with conditions like CP, spinal injuries, even different types of multiple amputations, would - 5 years after dozens of ex-S6s took over the S5 class - have reached the point where they've decided "I might as well retire, I just can't race fairly against the ex-S6s, they have too much of an advantage over me."